Spain: the only option when the DWP and NHS abandon you

This is a story we believe many people are living through, right now.

It is sadly a desperate plea for financial help. But it’s more than that. It’s a statement on the position that the Department for Work and Pensions (DWP) and NHS leave hundreds, possibly thousands, of people across the UK in. This is just one example.

My partner has to go to Spain for life changing surgery. But it costs. The initial amount needed to begin the process is £8,000. 

You can donate via PayPal at http://www.paypal.me/MrTopple

Read below to find out why we’re having to do this.

I wouldn’t wish chronic ill health on anyone. But if people could spend a day in my partner Nicola Jeffery’s body, then maybe the world would be a very different place.

She lives with 16 different illnesses and conditions. You can read more about that here. But sadly the UK’s public health service doesn’t treat many of these. Some of the ones it either doesn’t deal with, or doesn’t treat correctly, are:

I gave up work full time to care for her. Since then, the DWP awarded her just the standard daily living component of Personal Independence Payment (PIP). You can read more about that here. We sent them a Mandatory Reconsideration. It’s been 11 weeks and counting for its decision. My claim for Carer’s Allowance has now been seven weeks, complicated by the fact I am self-employed. Because of the waiting on these we cannot apply for any housing support. We are now in a very dire situation with no seeming way out.

A ‘thank you’

We’ve been fundraising to continue Nic’s ME treatment under the care of the amazing Dr Sarah Myhill.

We raised enough to buy the majority of her ME treatment for six months, so thank you. This cost just over £1,800 in the end.

This is just about it, excluding the £500 worth of antivirals and £400 worth of mycotoxins treatment (because both are prescription only):

MEDS 1

As an example, this is the cost of six months worth of thyroid and adrenal hormone replacements:

MEDS 2

I note some people have said on Twitter ‘why can’t the NHS provide these?’. Firstly, because the NHS repeatedly claimed she had no thyroid issues. This, after proper evaluation, was not the case. Secondly, if it did diagnose it, Nic would be given chemical substitutes, which we do not believe in. The hormone replacements she is on are totally natural (bovine and porcine) – and her blood work has shown they have had the same effect as their chemical counterparts.

We are confident this regime will resolve Nic’s ME. We’re loathed to go into detail until the course is over, but suffice to say the signs so far have been good.

What we can say is that she was living with polycystic ovary syndrome, first diagnosed in 2009. But since starting Dr Myhill’s regime, this has been completely cured. Effectively, the regime for ME has also cured this other illness.

The NHS, meanwhile, says polycystic ovary syndrome “cannot be cured”. We think we know why it has with Nic, and it is absolutely unbelievable when compared to what the NHS offers for those living with it.

Sadly, running parallel to this has been a severe deterioration in her EDS-related CCI and AAI.

‘Rare’, or ‘rarely diagnosed’?

We first discovered Nic was living with these in March. I’d suspected as such, as she was symptomatic of them. So we had a £1,250 upright MRI (not available on the NHS and the only way to properly diagnose the conditions). Then, a Spanish surgeon interpreted the results and confirmed both.

As MEpedia describes, CCI is:

a pathological condition of increased mobility at the craniocervical junction, the area where the skull meets the spine. In CCI the ligamentous connections of the craniocervical junction can be stretched, weakened or ruptured. This can lead to compression of the brain stem, upper spinal cord, or cerebellum and result in myelopathy, neck pain and a range of other symptoms.

 

CCI usually develops as a result of physical trauma such as a car accident, an inflammatory disease such as rheumatoid arthritis or a congenital disorder such as Down’s syndrome. More recently, physicians have reported an increased prevalence of CCI in patients with hereditary disorders of connective tissue such as… (EDS).

AAI is kind of the same. The main difference between the two is which vertebrae are involved.

In short with both, the ligaments holding her top four vertebrae (the cervical junction) in place are floppy due to the EDS. So, the vertebrae are not held in place properly. They move in ways in which they shouldn’t, interfering with many of the nerves that come out of that part of the spine.

We know she has a 42° overshoot of her C1 over her C2 (her top two vertebrae). It should only be 35°. She has brain stem compression due to odontoid displacement (a piece of bone that allows the C1 to pivot on the C2). We know that her facet joints sublax (partially dislocate) on turning her head to both sides.

The effects of her CCI and AAI are systemic and overarching. Vomiting, seizures, difficulty swallowing, loss of bladder control, cardiac and pulmonary dysfunction and weakness in her muscles and joints to name but a few.

Overarching, systemic effects

Nic has numerous conditions and symptoms which I believe the instabilities are responsible for:

  • Gastroparesis and dumping syndrome. These are conditions which seem to alternate in her. The former is where the stomach doesn’t empty properly, the latter where it empties too quickly. Both cause various, severe symptoms like uncontrollable vomiting. They are both probably related to brain stem compression; specifically the vagus nerve. She was free of gastroparesis from August until October 19, when it returned with a vengeance. This was the longest she had been without it. We believe it came back partly due to a strain on her cervical junction which at first resulted in severe pain extending into her thoracic area and down her left arm. But it also flares up whenever she has a ‘crash’ due to the ME, which she also appeared to have. I think the process here is this: any form of exertion results in post-exertional malaise (PEM) due to the ME. This, in part, impairs her already compromised mitochondria function (due to the ME), thus disrupting energy delivery. Therefore, any underlying EDS/CCI/AAI-related issues (like impairment of stomach muscle/nerve function in gastroparesis) are made even worse. Hence when Nic has PEM, her gastroparesis flares up. This time, the additional issues with her cervical junction appear to have been the trigger of it.
  • Dysphagia. This is where swallowing is difficult due to nerve and muscle dysfunction. Again, this is probably related to vagus or accessory nerve interference in the brain stem or cervical junction.
  • Focal autonomic/impaired awareness and tonic clonic seizures. A neurocardiologist agreed with my theory that the below is likely to be the process which leads to her seizures; in my opinion, once again at the root of this is brain stem compression as the heart’s sinoatrial node’s rate of production is ultimately controlled by the vagus nerve:NICOLA SEIZURE PATHOLOGY
  • I can accurately predict (with an 89% confidence rate) when she will have a seizure. This is due to an average 11% drop (versus her usual mean) in both her systolic and diastolic blood pressures the preceding night.
  • Postural orthostatic tachycardia syndrome (POTS). This is where the heart fails to respond properly when posture is changed. It causes dizziness and imbalance. This could be caused by interference with the vagus nerve, which controls the parasympathetic aspects of the heart; essentially heart rate at rest. In short, the baroreceptor reflex is not being communicated to the medulla oblongata in the brain stem correctly. This causes her heart rate to remain increased after going from a supine/sitting to standing position.
  • Peripheral neuropathy. This is loss of sensitivity in her extremities, like hands and feet.
  • Cerebrospinal fluid (CSF) leak. This is where the fluid that cushions the brain and/or spine leaks out due to a tear in one of the duras (membranes). It happened in August during the postictal stage of a tonic clonic seizure. Nic projected herself out of bed, hitting her head and neck on the dressing table. Kings A&E said it was rhinosinusitis. We had to see a private neurologist to confirm the leak. The symptoms passed by the middle of October. But the leak showed that the vulnerability of her cervical junction has increased, as this was the first time she has had one.
  • Reflex micturition/neurogenic bladder. This is an increased need to urinate and a degree of loss of bladder control, which has manifested more since the CSF leak. Nic has to urinate around once an hour, sometimes more – even though her fluid intake is less than mine. Whether this relates to the brain stem compression is more complex. If it does, it may be due to signals from her bladder’s afferent nerves being miscommunicated. Or, it may be faults in the hypogastric/pelvic/pudendal nerves. But if it’s the latter, that may be an indication of a fault lower down her spine; specifically tethered cord syndrome which we need to get her checked for.
  • Cervical radiculopathy. This is nerve interference in the cervical junction, which causes pain to radiate from this area to other parts of the body (depending on what nerves are compromised).
  • Chronotropic incompetence. This is where Nic’s heart rate does not increase appropriately during exercise. I believe this is caused by interference with the cardiac plexus via the sympathetic trunk and/or left vagus nerve; this controls heart rate over 100bpm. But this could also be related to hormone dysfunction due to the ME, as well as the vagus-controlled parasympathetic response to initial heart rate increase.

Wheelchair bound

But Nic’s muscle and joint strength has also deteriorated. It has got to the stage where she sometimes has to use a wheelchair to go out. This is because the weakness in her legs and lower back pain means she cannot walk more than a few metres without having to stop or being in pain. Sadly, one of only a handful of neurosurgeons in the UK who understand the instabilities didn’t think her weakness was bad enough to warrant surgery on her cervical junction.

What he failed to realise is that Nic practised karate to a proficient level as a child/early teen. This has meant that her strength started out as being more than your average patient. So, what the neurosurgeon considers to be strong now, is actually a worsening by Nic’s standards. In this case, one size doesn’t fit all.

Off to Spain

So, we have to begin the process of potential surgery in Spain. Why Spain? Because the NHS doesn’t recognise the CCI or AAI, therefore there are no treatment options available.

This surgery will cost anywhere between £60,000-£200,000, depending on the extent of what Nic has to have done. This will be a separate fundraiser. In short, the surgery involves fusing/screwing her vertebrae together to hold them in place. This is not without it’s own serious complications and risks.

To do this, we have to have more non-NHS tests done, like a 3D CT of her cervical spine, MR angio/venogram, cineradiography flexion/extension and CT of her lower spine to check for tethered cord syndrome. This will be around £1,200 plus consultation/interpretation fees. Then we will need to travel to Barcelona for a face-to-face consultation with the surgeon. The cost of the appointment is around €300 plus travel costs. Nic can’t fly with her instabilities due to the risks posed by pressure changes, so boat or train it will have to be. This makes the trip even more expensive.

We also need to have her genetic testing for Ehlers-Danlos done. This is because there is now a question mark over her subtype. It may be classical. Ultimately, we want Nicola to be tested so her son can then get the diagnoses he needs. This is because EDS’ are inherited conditions. A positive genetic test for her means he won’t have to endure the years of being told his symptoms (some of which he already has) are ‘all in his head’, as his mother did. We don’t want him to suffer in the same way Nicola has. This will be £2,000 each.

UPDATE: for those asking why the NHS cannot help with this. Nicola’s EDS diagnosis has all been done privately, due to two-year NHS waiting lists. The EDS specialist at NHS UCH is now no longer taking patients. This is who we saw privately. We’ve tried to get the NHS to do the genetic testing. But the request from the GP just got bounced back, as did my own request direct to the centre that does the testing.

The additional spinal scans are not available. This is because the NHS does not even recognise Nic’s CCI and AAI. Moreover, if you want cases in point of how the NHS views people who have had spinal fusion surgery abroad, check out my podcasts with Samantha Smith and Victoria Cheney:

CanaryPod: Topple Uncaged meets… #SaveSamantha

CanaryPod: Topple Uncaged – Antonia’s story, part one

CanaryPod: Topple Uncaged – Antonia’s story, part two

All in all, we think this is going to cost around £8,000 to begin with.

Rebooting life

It is a damning indictment of the NHS that any of this has to be private, let alone abroad, in the first place. But Nic is not alone. Google “craniocervical instability” and look under “news” and you’ll see countless other people in her situation. All are fundraising as the NHS doesn’t help.

It’s also a damning indictment of the DWP that the instabilities, plus all Nic’s other illnesses, only ‘deserve’ £58.70 a week.

We hope that once the ME, CCI, AAI and mycotoxicosis (more on that in another article) are resolved as best they can be, Nic can hit the ‘reboot’ button on her life. She has never known being a mother, or an adult, without chronic illness. A whole world of possibilities awaits her, if we can just get her well.

So, once again – if you can help please, please do.

I want to give her some quality of life back. But I need your help to do it. Please donate what you can below or via our GoFundMe page at https://www.gofundme.com/f/urgent-medical-help-for-someone-with-16-illnesses
Donate Button

The DWP is now pushing 400,000 more people onto the sanctions regime

The Department for Work and Pensions (DWP) has published its latest claimant count estimate for unemployment benefits. But look beyond the figures, and a picture is revealed of how many estimated people, currently unemployed but not subject to sanctions, will be so under Universal Credit.

The number is around 400,000 claimants, higher than a previous estimate of 300,000. And within this group may well be carers, sick and disabled people.

The DWP: moving the goalposts

The Claimant Count was previously the number of out-of-work people claiming welfare, specifically Jobseeker’s Allowance (JSA). But recently, after the Office for National Statistics raised concerns about its accuracy, the DWP changed it. It became the “Alternative Claimant Count”. This was due to the introduction of Universal Credit.

Essentially, the Alternative Claimant Count includes those getting JSA plus people on Universal Credit who are required to look for work.

But what the count also includes are estimates from 2013 onward of people who, if they were on Universal Credit, the DWP would make look for work. These are claimants who under old (“legacy“) benefits would not have had to. They are called ‘additionals’ and the figure is an estimate, based on the notion of the DWP having implemented Universal Credit in full from January 2013.

And here’s the catch.

“Additionals”

As the DWP says, these ‘additionals’ consist of:

  • People who are not in work but previously claimed Housing Benefit only, not Jobseeker’s Allowance.
  • People whose household previously claimed Child Tax Credit, but are not themselves earning more than the Universal Credit administrative earnings threshold; and nor do they have responsibility as the main carer for their child.
  • People who are the partner of a claimant of Employment and Support Allowance (ESA) or Income Support, but who do not themselves have caring responsibilities, a disability or a limitation on their ability to work

As the Child Poverty Action Group (CPAG) said in a February briefing [word.doc download, p4]:

The DWP’s estimates of ‘additionals’ are inevitably speculative, and the actual number of additionals who join the claimant count in the future will depend on labour market conditions at the time as well as on benefit entitlements, administrative procedures and claimants’ own decisions. Nevertheless, the fact that only about 82,000 ‘additionals’ were actually claiming UC [Universal Credit] at November 2018, compared to a hypothesised 366,000 if UC had been fully rolled out, indicates how much further the implementation of the extended conditionality of UC still has to go.

And further to go the conditionality of Universal Credit still has.

400,000 more sanctioned people?

82,000 actual ‘additionals’ in November 2018 represented 6% of the total number of Universal Credit claimants at that time (figures via Stat-Xplore):

UC figures.png

The DWP’s most recent estimate of ‘additionals’ yet to go onto Universal Credit was 308,000. This was published on 19 July.

But the Office for Budget Responsibility (OBR) forecast [xls download, table C6.2] in 2018 that 6.7 million people would eventually be on Universal Credit once the DWP has fully rolled it out.

So, based on November 2018 figures, if the trend continued, this would mean that by the end of the roll out, 402,000 people would be classed as ‘additionals’; subject to sanctions when they weren’t before.

So, why does this matter?

Forced to work

The DWP is effectively forcing people who previously did not have to look for work into the same sanctions-linked regime as those who do. And it’s who’s in this ‘additionals’ group that counts.

Take one subset of additionals, those who:

are the partner of a claimant of Employment and Support Allowance or Income Support, but who do not themselves have caring responsibilities, a disability or a limitation on their ability to work.

DWP figures show as of May 2019 there were just over 14,000 people like this. What it doesn’t say is why these people aren’t working while their partner claims ESA or IS.

Hitting unpaid carers?

To get Carer’s Allowance, you have to be caring for someone who gets Personal Independence Payment (PIP). As I’ve documented for The Canary, the DWP is making it increasingly difficult to get PIP. Between April 2013 and April 2018 the DWP denied around 381,000 people PIP; people who used to get its predecessor Disability Living Allowance (DLA). These people would still be able to get ESA.

So it begs the question: how many partners of these people, previously entitled to DLA, are still caring for them, even though the DWP refused them PIP?

The point being that to be classed as having “caring responsibilities” in the eyes of the DWP you have to get Carer’s Allowance via PIP or meet very specific criteria.

So, these 14,000 people who the DWP are going to force to look for work could well be full time carers to their partners. It’s just that because of the department’s vicious assault on PIP, they’re no longer recognised as one. Or, their caring duties are such they don’t necessarily fit the restrictive and quite frankly outdated criteria.

The same principles could apply to the two other subsets of ‘additionals’.

Hitting sick and disabled people?

The partner of someone claiming Child Tax Credits, who only can work a few hours a week due to fluctuating ill health; ill health that doesn’t fit DWP guidelines for ESA. I know one such person myself.

Or the “people who are not in work but previously claimed Housing Benefit only, this means [they] did not claim Jobseeker’s Allowance”. These could be people who the DWP has refused to give ESA but can’t apply for JSA as they would not be able to work. Essentially, people the DWP has let slip through the cracks.

I also know someone like this. They’re housebound most of the time due to complex physical and mental health issues. But the DWP refused them ESA and forced them to claim JSA. A tribunal eventually disagreed, and made the DWP put them back on ESA. If it hadn’t, they would have ended up coming off JSA due to not being able to cope with work. But then, when Universal Credit applied to them they would have been forced to look for work, or get no welfare payments at all. Not even Housing Benefit.

Dystopian callousness

We are hitting peak dystopian callousness from the DWP. While the numbers mentioned above may seem small, viewed through the prism of the carnage Universal Credit is already inflicting, these figures are another damning indictment of the department and successive Tory governments. The authoritarian, nefarious drive to push as many people into whatever kind of work possible, continues unabated.

I’ve given up writing full time to support my partner Nic, who lives with 16 diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

We are currently fundraising to try and get her treatment for her two types of seizures, not available on the NHS. Read about that here.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
Donate Button

The DWP denied benefits to someone with 16 illnesses. We now need your help.

The Department for Work and Pensions (DWP), the UK’s social security agency that is supposed to support disabled people, just denied full benefits to a chronically ill and disabled person who lives with 16 different diseases, illnesses and conditions.

The decision shows the abject failure of government outsourcing. But it also demonstrates the callous and incompetent nature of the welfare system.

UPDATE: we urgently need to raise £1,500 to begin with to be able to continue Nicola’s treatment, otherwise everything will have to stop. This is unthinkable for me. If you can please help, donate via http://www.paypal.me/MrTopple

16 illnesses and counting

Personal Independence Payment (PIP) is a welfare entitlement from the DWP. Is it intended to help towards the additional costs disabled and sick people have due to their conditions.

My partner Nicola Jeffery is one such person. You can read all about her medical story here. In short, she lives with:

Oh, and possible Secondary Mast Cell Activation Syndrome. We’re still looking into that.

Nicola has deteriorated. The CCI and AAI are becoming severe and dangerous. She had a seizure a few week’s ago which caused a fluid leak from her brain. She has brain stem compression. Now, she often cannot leave the house without a wheelchair, as she is too weak:

ECLg55oX4AAOsUM.jpg

I gave up work full time to support Nicola. You can read more about that decision here. Since then, we have accumulated probably the best clinical evidence of her illnesses available in the UK. I’d put my neck on the line to say most people have not got the extent of a diagnostic picture she has.

A financial black hole

It has cost a small fortune from my mother’s life savings, and we are now having to fund raise to get further treatment. We are having to fund raise for her seizures, like the one below:

This is because the NHS will only recognise them as “functional/dissociative” or “psychomatic”, even though I have hard clinical evidence that proves otherwise.

Now, we are also having to try and raise the money to continue her treatment.

She is currently under the care of one of the only doctors in the UK that attempts to properly treat ME. She has been on a programme for several months. But now, if we don’t raise £1,500 quickly, this will have to be stopped dead in its tracks, and all the progress she has made so far will be undone. This is terrifying.

We also have to begin the process of potential surgery in Spain. Why Spain? Because the NHS doesn’t recognise the CCI or AAI, therefore there are no treatment options available.

This surgery will cost anywhere between £60,000-£200,000, depending on the extent of what Nic has to have done. This will be a separate fundraiser.

To do this, we have to have more non-NHS tests done, like a 3D CT of her cervical spine, MR angio/venogram, cineradiography flexion/extension and CT of her lower spine to check for tethered cord syndrome. This will be around £1,200 plus consultation/interpretation fees. Then we will need to travel to Barcelona for a face-to-face consultation with the surgeon. The cost of the appointment is around €300 plus travel costs.

We also need to have her genetic testing for Ehlers-Danlos done. This is because there is now a question mark over her subtype. Ultimately, we want Nicola to be tested to her son can then get the diagnoses he needs. This means he won’t have to endure the years of being told his symptoms (some of which he already has) are not ‘all in his head’. We don’t want him to suffer in the same way Nicola has. This will be £2,000 each.

You can read about our fundraising here, and if you can help with the £1,500 for the ME treatment, or the £8,000 for the EDS-related work, please donate via this link:

http://www.paypal.me/MrTopple

She is house bound for 85% of the time. When she does go out, she has to build up to it. Afterwards, she is incapacitated for several days. This is just one aspect of her health. The implications of all her conditions are extensive and systemic, affecting every part of her body.

Going back to the DWP

So, she applied for PIP. We submitted several doctor’s reports, a complete diary of Nicola’s life for the entire month of May, her complex treatment regime and more.

After a PIP assessment where the assessor let a fire door slam onto Nicola, almost knocking her over and injuring her hip, we got this decision:

Nic PIP.jpg

As is usual, the assessor appeared kind and understanding, which we know is never a gauge of the outcome.

I wasn’t expecting the DWP to award Nicola higher rate for both without a fight. But I was expecting standard rate mobility and possibly higher rate for daily living. To say I was furious wouldn’t do my anger justice.

Let me break the DWP’s decision down for you using one area as an example. We have clinical evidence to back up every single claim I make below.

Full time caring? Not according to the DWP

Around four hours of my day is spent preparing Nicola’s complex medication regime and cooking. The former consists of 26 different supplements and pharmaceutical medications, administered at six different points across the day.

This is what she takes in the morning:

_20190719_100357.JPG

The latter consists of a controlled carbohydrate and sugar free diet, where every ingredient has to be measured and the calorie (kcal) content calculated.

Nicola has dysphagia, which means she has difficulty swallowing and can be at risk of choking. She also has impaired cognitive function, meaning she cannot remember what she is taking when. Her impaired cognitive function means she struggles to follow written instructions for something with this level of complexity.

In her May diary, we noted that she attempted to cook a meal once. She struggled to remember the quantities of ingredients and was left exhausted and distressed after trying.

All the supplements, medications and the diet serve various functions to try and improve Nicola’s health; specifically with her ME and hEDS.

To be clear: this is not our medication and diet plan. It’s not a “lifestyle choice”. This is from one of Nicola’s private, General Medical Council (GMC) registered doctors. We also have written evidence of this plan being approved by three NHS, GMC-registered consultants.

The DWP’s score for Nicola on “managing your treatments” was 1 point, the minimum.

The reality? She should have scored 8, as I have to spend more than 14 hours a week preparing and administering it. I also have to “monitor” her “health condition” by taking five blood pressure, heart rate and temperature readings across the day. This is because some of the medication she is on results in changes to these. I also have to “monitor” her “health condition” by documenting her symptoms and being proactive when she has, for example, a Post-Exertional Malaise (PEM) crash, as this requires additional support and medication.

The DWP did not recognise any of this. It was the same story on most of the other descriptors. I won’t go into them as this article will turn into an essay.

But it’s the mobility decision that is the most infuriating.

Mobility chaos

The DWP did not believe that Nicola’s uncontrolled, random seizures warranted me having to support her to make familiar and unfamiliar journeys. Even though I have witnessed her having them in the street, and also at any time of the day. It did not equate that if she did have a seizure, on her own, in the street, and collapsed she would be at serious risk of neck injury owing to her CCI and AAI. Nor did it intersect this with the fact that Nicola can only attempt to go out one day a week.

It didn’t equate for the fact that Nicola cannot risk using public transport anymore due to, again, the risk of injury to her neck. Nor did it equate for Nicola not being able to use public transport anymore due to the risk of infection due to her weakened immune system. It didn’t equate for Nicola having an anaerobic threshold of four metabolic equivalents (METs), meaning she cannot do any exertion which takes her over this. Walking the 0.8km to our train station would be this. Going to and from a bus would use up part of those four METs.

The DWP didn’t take into account that Nicola can no longer plan and go on an unfamiliar route unaided, due to her cognitive impairment leaving her at risk of getting lost. Nor did the DWP take into account that Nicola forgot her parents address recently. They live 30 seconds walk away from us.

A whitewash

Overall, the assessment was a whitewash of the severity of Nicola’s health. The assessor even had the audacity to say that she was “not diagnosed with any cognitive conditions”. Even though ME, hEDS, CCI and AAI all effect cognitive function, as stated in the literature available.

As a side note, the assessor also said:

You are not taking any medications to treat your symptoms of nausea and vomiting and there is no evidence to suggest these symptoms in your plan.

The second part is firstly a lie, as the evidence was there in Nicola’s diary. The first statement about medication shows the incompetence of the assessor and the DWP. Nicola is taking adrenal hormone replacements which, in part, her doctor has prescribed to attempt to improve her digestive transit, thus improving her gastroparesis.

Back in 2016…

What sticks in the throat even more is that Nicola is getting the exact same PIP award as she was previously getting in 2016. That is, standard rate daily living component. This is despite at that time only living with an incorrect fibromyalgia diagnosis. But moreover, this is despite a severe deterioration in her health, which I have fully documented. It shows a systematic failure by the DWP to ensure health assessment providers comply with working from the standardised guidelines. Or the department has built in this fault in the system to ensure the muddying of waters when it comes to a level playing field for claimants across the board; with the goal of saving money. It’s probably a bit of both.

The decision also shows the preposterous contradiction that sits at the heart of the DWP.

Toxic contradictions

We are bombarded with this constant narrative of ‘scroungers’, ‘shirkers’, ‘benefits cheats’ and the notion that the government wants disabled people to get back to work.

Yet if you buy into that distinctly capitalist mantra, Nicola’s decision goes against this. Surely the DWP wants to support her to live independently and to get back to work? But by denying her entitlements it’s stopping her health improving. And ultimately, it is stopping her finding a job.

So, which is it?

Neither. Apparently the corporate-driven push to force as many sick and disabled people into work doesn’t apply to complex chronic illnesses. Nor does the notion of the state providing support when life metes out its worst at you, apply either.

Complex chronically ill people, often living with ME and EDS, are literally being left to rot. In Nicola’s and other’s cases, it is partly because the system and specifically the NHS does not even recognise her conditions. The assessor didn’t even know what several of them were. It is also because the PIP criteria is essentially incompatible with these kind of conditions.

Their carers and advocates are also left on the scrapheap. They are left scrabbling around, begging and borrowing, desperately trying to garner some minuscule quality of life for their loved ones. The same DWP contradiction applies here, too. I cannot work full time and therefore contribute tax while Nicola is so ill. Yet by denying her full PIP I cannot get state support either.

Lives, wasted

Two lives. Literally being wasted.

And for what? To save money on a welfare budget [pdf] that makes up around 2% of the UK’s total gross domestic product? We and millions of others are literally paying the price for economic illiteracy, personal incompetence and ultimately nefarious greed. But of course, the system is such it’s supposed to be like this.

Overall, Nicola is housebound the majority of the time. Her son has had to move into his dad’s due to the severity of her illnesses and our attempts to improve her health. She is left:

  • Unable to cook.
  • Unable to clean.
  • Unable to write more than a few sentences.
  • Unable to have visitors for longer than two hours.
  • Unable to use social media for long periods of time.
  • Unable to read more than a few pages of a book.
  • Unable to have sex.
  • Unable to eat properly.
  • Unable to have proper bowel movements.
  • Unable to shower daily and properly.
  • Unable to live any kind of life.

If she does any of the above, her health deteriorates.

And still, all this is worth £57.30 a week to the DWP.

Out of options?

We are now left with a Mandatory Reconsideration, and most likely an appeal. Moreover, we are also left with hardly any financial support.

But most of all Nicola, who was for years told her 16 illnesses were ‘all in her head’, is left feeling disbelieved, isolated and abandoned. Again. Like she has for most of her adult life, not least by her family, some of whom still disbelieve her to this day.

All this just so the DWP can save a few pounds and force people back into work. Our society is truly broken.

I want to give her some quality of life back, despite what the DWP thinks. But I need your help to do it. Please donate what you can below.
Donate Button

We now have to fund-raise to solve my girlfriend’s seizures

Some of you may be aware of my girlfriend Nicola Jeffery’s story. Many will be aware of her seizures. Now I believe I may have worked them out. But it’s going to cost to prove this. And we need some financial help from the public.

A complex picture

You can read all about Nicola’s medical story here. In short, she lives with:

I gave up work full time to support Nicola. You can read more about that decision here. In short, we are currently on a complex treatment plan for the ME. This is starting to show some results, with improvements across various clinical measures. But progress is slow.

What we still haven’t got to the bottom of are Nicola’s seizures.

Seizures: blighting her life

This is one of them:

She had one this morning (Wednesday). They have blighted her life for many years and no neurologist can work out what’s causing them.

At first, she was told she was waking up incontinent and in severe pain due to the birth of her child, and her now incorrect diagnosis of Fibromyalgia. Her previous partner witnessed a few of them. Her son, a toddler at the time, even had to call an ambulance during one episode.

But since we have been together, I have documented them fully.

Debilitating

The challenge for Nicola is multi-stranded. She lives with ME and hEDS, which makes her muscles weak and prone to exhaustion after exertion. Having a seizure, where her whole body contorts and strains, has a devastating effect on her. It leaves her effectively incapacitated for up to five days.

They severely impact her already damaged cognitive function. She has chipped many of her teeth and due to the hEDS her bottom front ones are now extremely loose. Moreover, she is of course at risk of Sudden Unexpected Death in Epilepsy (SUDEP).

Now, I think I know what is causing them. But to get it properly diagnosed, we’re going to need some help. This is in the hope that we can rid Nicola of one of the most distressing aspects of her illnesses.

My theory

In short, she lives with Hypocapnia, also known has Hypocarbia. This is essentially below-normal levels of carbon dioxide (CO²) in her blood. We discovered this during a two-day Cardiopulmonary Exercise Test (CPET).

Hypocapnia has two major effects. It firstly reduces arterial blood pressure. We know Nicola’s blood pressure is already hypotensive. Secondly, it causes Respiratory Alkalosis, where the blood becomes too alkaline. Normally, Hypocapnia is caused by hyperventilation. But due to the CPET testing in Nicola’s case we know this is not the cause.

What I think it happening to Nicola is the following:

  • Her mitochondria dysfunction, Chronotropic Incompetence and Megaloblastic Anaemia are causing cardio and pulmonary dysfunction. We know from various testing, for example, that Nicola’s mitochondria fail on minimal exertion and that her red blood cells do not carry oxygen around her body correctly.
  • Specifically, she has Ventilation/Perfusion Mismatch, where a part of her lungs get oxygen without blood flow or blood flow without oxygen.
  • This results in Hypocapnia.
  • It then causes her blood pressure to drop extremely low, probably due to vasodilation. It also causes her blood to become very alkaline.
  • The knock on effect is restricted blood flow to her brain. This is known as Cerebral Hypoperfusion.
  • This vasoconstriction leads to the seizures, both the focal autonomic aware and tonic clonic ones.

We know there is a link with her blood pressure. I’ve identified that the night before she has a seizure, her systolic/diastolic blood pressures drop by, on average, 8% and 19% respectively.

So, we can now predict when she will have one or both of her seizures. But I do not have definite answers.

Another long journey

To get these, and finally rid her of these distressing episodes, we will need to find a neurologist, cardiologist, haematologist and pulmonary expert who are willing and open minded enough to do all the necessary testing. It will involve more blood tests, and numerous diagnostics the night before, during and after a seizure.

None of this, from my theoretical diagnosis to the investigatory work, is available on the NHS. Nicola’s seizures have already been labelled “psychosomatic” and “functional” (ie. all in her head) by several neurologists. We will not get help there.

Most of Nicola’s treatment is now private, due to the lack of recognition and clinical care for her illnesses on the NHS. You can read more about that here. We currently have the money to fund this.

But to investigate Nicola’s seizures fully we need help. It’s an unbudgeted expense in her treatment plan.

We need your help

So, we are asking people to donate via my PayPal to support us in trying to get to the bottom of this. Once I have an idea of cost I’ll publish this. I know a standard consultant appointment will be at least £250-£300.

We both understand how hard things are for many people at present. But anything you can donate would be greatly appreciated.

Nicola’s life has been blighted by chronic ill health for too long. If we can solve her seizures, then one aspect of her complex and debilitating medical picture will finally be resolved.

I want to give her some quality of life back. But I need your help to do it. Please donate what you can below.
Donate Button

Forced contraception for ‘vulnerable’ women is happening in the UK

A UK charity is offering support for “vulnerable” [pdf, p63] women who have had social services take their children away from them.

But if they want this support, they first have to agree to take contraception to stop them having any more kids. If you were wondering whether Eugenics was still alive and kicking, your question has been answered.

Pause for thought

“Pause” was founded by social worker Sophie Humphreys. Originally operating in Hackney, after the Department for Education got involved in 2015 it expanded [pdf, p13] to six other local authorities. Three years and £millions of lottery and ‘Tampon Tax’ money later, and Pause now operates 20 “practices” across the country.

Essentially, it supports women who have had multiple children removed by social services or other government agencies. It is aimed at women who, if they fell pregnant again, would be at risk of having that child taken away. These are people with complex circumstances, often involving domestic violence, drug or alcohol abuse and other factors.

Pause uses a helpful Venn diagram to show the range of support services it offers. The goal being to “break destructive cycles”:

Asset-1-100.jpg

Pregnancy reduction

As a government evaluation of Pause noted [pdf, p6], one of the benchmarks of its success is:

to what extent is the Pause model effective in reducing the numbers of children removed from women’s care?

This evaluation, from 2017, answered its own question – deeming the programme a success. It said [pdf, p7] Pause was:

extremely effective in reducing the number of pregnancies experienced by women during their 18-month interventions. While 2 women became pregnant during their time with Pause, it is estimated that between 21 and 36 pregnancies would have occurred, had the cohort of 125 women not been engaged in the programme. Given the women’s histories, these pregnancies would have been likely to have resulted in removals

So, why is Pause so effective in reducing women’s pregnancies while they are on its programme? A condition of joining the programme is that they have to take contraception during it. When I saw Pause on BBC London News and realised what it was about I was literally gobsmacked.

Women who have gone through the programme, politicians and local government chiefs welcome Pause’s approach and achievements.

For me, it is little more than 21st century Eugenics.

Selective breeding

This pseudoscience was popular at the turn of the last century and still holds traction in some quarters today. Essentially, its proponent’s claimed that to ensure the continued progression of us as a species, certain groups in society should not be allowed to reproduce. This was because the idea of ‘nature’ over ‘nurture’ deemed that, as Harold Laski, chair of the Fabian Society from 1946-48 and chair of the Labour Party from 1945-46, noted [pdf, p5]:

Bad stock produces bad stock; the able produce the able; the strong produce the strong.

So, Eugenicists like Laski believed that defective humans should not be allowed to have children. As he noted [pdf, p11] in a 1910 essay:

Extreme emphasis must be laid on the danger of breeding from the unfit at the expense of the fit. Statistical proof of this is ready to hand. In the first place, it is necessary always to bear in mind that half of one generation is produced by a quarter of its predecessor. If this is the case, it is surely of importance that marriages should be selective. If only a small proportion of parents are mentally or physically unfit to take the burden of reproduction upon themselves, the danger of their doing so is obvious.

Laski went on to say [pdf, p12] that of the “pathological stocks”:

The birth-rate among the London mentally defective per family is 7; in Manchester it is 6.3. Dr. Goring has estimated that the fertility in criminal stocks is 6.6; in English deaf-mutes it is 6.2; among albinos it is as high as 5.9. In the families which use the schools for the feeble-minded, the average number of offspring is 7.3. The only conclusion to which these statistics point is that the unfit stock is increasing at the expense of the fit.

Mentally defective” was a catch-all term, used to describe “idiots”, the “feeble-minded”, the “morally defective”, criminals, unmarried mothers and drunks. In other words, large swathes of the poor.

Fast-forward to 2019, and for me the similarities between Eugenics and the Pause programme are frightening. Yet it appears we as a society have learned nothing from our past errors.

Dressing up the undressable

Pause dresses up its programme as something that:

recognises the women with whom we work as individuals, rather than defining them by the issues and challenges they face. Every Pause programme is driven by the woman and her needs.

It also says that it fosters relationships “where women are valued and respected for who they are”.

Yet this is juxtaposed with forced contraception. To be clear, I’m not saying the people behind the founding of the Pause programme are Eugenicists. Nor am I saying that they are fully aware of the gravity of what they are pushing. But as an organisation, forcing contraception upon certain demographics in society is a slippery slope. One that we’re already on.

Social engineering

Over the past ten years, we have already seen poorer families coerced or economically nudged into not having more children. The two child limit on tax credits is one example of this. As I wrote for The Canary in 2017, other factors at play include:

  • Wage increases not keeping pace with inflation since 2007/08.
  • Child poverty increasing to one in four children, possibly putting poorer parents off having any more children.
  • Benefits being frozen at 2015 rates.
  • Health inequality between the richest and poorest remaining “persistent“, according to the government’s own analysis. For example, NHS England found the poorest people had 71% more emergency admissions to hospital than the richest [pdf, p4].

All this, as I wrote, had by 2017 resulted in a fall in the birthrates among the poorest in society, with those considered in the lowest group (the persistently unemployed/sick/disabled people) having fallen by a staggering 33%. Meanwhile, the richest were actually having more children.

This is no coincidence. As we see with Universal Credit, government targeting of the poorest in society to push them to its fringes is intentional. A corporate dystopian future is being ushered in. And Pause’s programme of effectively stopping mothers having children in return for support is part of this.

But there are other worrying aspects of the programme, too.

Safeguarding concerns

As the government evaluation from 2017 noted, Pause deals with “vulnerable” women. It said that:

A number of Practitioners reported that supporting women to get a correct diagnosis for previously undiagnosed mental health conditions, and cognitive or physical disabilities, was a high priority, not least because it entitled them to certain benefits. Undiagnosed learning difficulties also made some women vulnerable to various forms of exploitation and abuse (including sexual and financial abuse), as they had little, or no, formal support in place prior to Pause. As a result of practical support to access health services (and also, in some cases, direct advocacy within those services), several women received appropriate diagnoses that entitled them to improved support from health, social care, and housing services…

So essentially, you’re taking women who you’ve already labelled as “vulnerable” and then forced contraception upon them before they’ve even had treatment for physical or mental health conditions? Or women who are survivors of sexual, physical and mental abuse? Also [pdf, p30] learning disabled women have been on the programme. I’d be interested to know what safeguarding was in place to ensure these women were making an informed choice when they entered Pause.

Systematic misogyny?

Also of note was that the evaluation found [pdf, p34] that most women had “experienced relatively high levels of domestic violence, compared to women in the general population”. But by contrast it said:

Analyses of alcohol and drug consumption indicate that most Pause women did not fall into established ‘higher risk’ or ‘problematic’ categories. However, the consumption levels of a significant minority either fluctuated into, or remained stable at, a high level.

So, most women on the first trials of Pause were survivors of domestic violence and not addicts. And yet, the programme puts the emphasis on them to change? For me, this is staggering systematic misogyny.

Broken families

I found nothing on Pause’s website about working towards mothers getting their children back. There is a very telling line that says:

The women who work with Pause are encouraged and supported to take a proactive role in giving their children ‘permission’ to settle and attach to the people looking after them, which can relieve the child’s stress and guilt.

For me, this sets alarm bells ringing. Why, if the Pause programme was so successful, would the ultimate end goal not to be to restore the family unit?

Forced adoption?

Forced adoption in the UK has historically been a boom industry for local authorities, and we’re one of only three countries in the EU that allows this. The latest craze to sweep the forced adoption industry is cases of Fabricated and Induced Illness (FII), which used to be known as Munchausen Syndrome by Proxy (MSBP). Check out campaign group Fiightback‘s work on this.

Local authorities and third sector organisations run Pause practices. Some councils set targets for adoption numbers. Put two and two together, and you have somewhere like Hull, where the city council runs a Pause programme, and the county council (East Riding of Yorkshire) has historically conducted adoptions in a targeted manner. I can hear the social workers now: ‘C’mon, Billy will be better off with his new family. You’re too damaged. Let him have the life he deserves while you get yourself better and give yourself some time for you, for once…’

Of course, this may all be conjecture from me. Make your own minds up.

Nudging away

The involvement of local authorities raises concerns for me over the whole “voluntary” notion of the Pause programme. If the same organisation which operates social services now also run a rehabilitation programme, any notion of women having a choice over going on it goes out of the window.

Don’t tell me that nefarious social workers haven’t already threatened mothers with the removal of their remaining child/children, or restricted access to their removed children, if they don’t join Pause and take the contraception required. I would imagine its also used as leverage in family courts by now.

It’s the same, dictatorial “nudge” culture that pervades the Department for Work and Pensions’ (DWP) “conditionality” for getting welfare. Things are voluntary on paper. In reality, they’re not. Read Sue Jones’ excellent work on the government’s application of economic nudge theory as a social engineering tool.

Moreover, involving local authorities brings the Pause programme into the political arena. Entrenched views of families who live in certain postcodes predisposes the programme to have made decisions about the women involved before they even start it. Moreover, it is already dealing with women who probably feel society has already left them “out of options”. Just one more ‘nudge’ and they’ll agree to go on the Pause programme.

But with Pause, one of the biggest challenges we face is that many working class people will welcome this.

Psychosocial warfare

We’ve had a ‘drip-drip-drip’ of demonising propaganda and ‘divide and conquer’ psychosocial warfare against people on welfare, single mothers, “criminals”, drug users and alcoholics for decades. It was hyper-effective throughout the Thatcher/Major/Blair/Brown/Cameron and May years.

So much so, that one family on a council estate will cheer when another family is evicted, has their children taken away or are sent to prison. I’ve witnessed it firsthand, repeatedly.

It’s what Jeremy Kyle was all about. Only middle class, metropolitan commentators would have called this noxious show ‘poverty porn’ or ‘exploitative’. The real motivation behind Kyle’s horror series was to pit working class people against working class people. Because after all, it was probably working class people claiming welfare that mostly watched it.

‘Look at them!’ we were encouraged to say. ‘Scum! So-and-so round the corner is just like them! I wish the council would do something about them. Kyle would rip them to shreds!’.

Divide and conquer. Bread and circuses.

I mean, even the Spectator said that Kyle was akin to a Roman amphitheatre, ushering in its victims “through separate, colour-coded corridors after being told lies about their opponents’ views so they fought (sometimes physically) for the cameras, not backstage or in makeup”. All while slightly less working class people bayed and cheered.

Moreover, as Faye Davies wrote for flowjournal.org, Kyle was all about cementing class hierarchy:

Kyle is the middle class man, well dressed, directing the discussion from a standing position. This is presented in opposition to the underclass, which presented as sitting down, being spoken to (or more clearly ‘at’) by Kyle. Our middle class representative is the one in control – of information, of audience interaction and of ultimate judgement about social behavior and action/inaction…

In shows such as these there can be no ultimate challenge to the sense that the middle-class authority and judgement should be the one that is dominant.

It’s this Jeremy Kyle culture, coupled with relentless government propaganda, that will allow Pause to continue with very little opposition – even from some of the very communities which should oppose it with every fibre of their being.

Papering over the cracks

As professor Brid Featherstone told BBC News, it looks like Pause “links to a notion of conditional welfare”. She said:

We need to think about this and talk about this, particularly because there are other projects that work with this group of women that achieve good results without requiring them to take contraception.

It opens up big ethical questions. I think it’s a fundamental human right being able to have a child.

At best, Pause is an effective establishment tool at papering over the gaping cracks in the foundations of the society we live in. It, knowingly or not, is helping to prop up the very system that causes the problems it deals with, in the first place.

We see this with many ‘solutions’ to human problems. For example, cognitive behavioural therapy (CBT) for the disease myalgic encephalomyelitis (ME), where patients effectively suppress their symptoms by thinking happy thoughts. This makes up for the appalling lack of research funding and keeps the psychiatry industry churning. Or council’s fining people for not recycling properly and London’s Ultra Low Emission Zone (ULEZ), essentially taxing poor people when around 71% of greenhouse gas emissions over the last 30 years have come from just 100 corporations.

The onus is always on the individual; the one who clings onto the bottom rungs of society. It’s your problem. You’re at fault. You need to fix yourself. This is exactly what Pause is doing. As it admits, it:

encourages women to… take responsibility for their actions.

It ignores the embedded problems we have as a species – patriarchy, misogyny, intentional, structural and systematic inequality and hierarchical sociopathy.

It employs the basics of nudge economic theory to change the behaviours of those involved and make them ‘acceptable’ citizens. If it really wanted to (as it claims [pdf, p13]) ‘break destructive cycles’ and allow women to ‘take control of their lives’, it might like to start with some political education about how the system intentionally traps them in their circumstances in the first place.

This is Pause at best.

Complicit in 21st century Eugenics?

At worst, it is complicit in 21st century Eugenics. From Universal Credit, to social cleansing via the gig economy, we are witnessing a return to Victorian-era thinking about poor people. That is, that those who do as they’re told, contribute to the system and eek out their existence without bothering the Establishment and the state, are of use to the system. They have financial value.

Chronically ill, sick and disabled people, those living with mental health issues, single mothers, homeless people, migrants and the ‘work shy’ are of no capital. They are of no use to the system. One UN committee said that successive UK governments has helped create an environment where disabled people are viewed as:

parasites, living on social benefits… and [living on] the taxes of other people…

UN special rapporteur on extreme poverty Philip Alston recently said of successive UK governments that they had “tasked” the DWP:

with designing a digital and sanitized version of the nineteenth century workhouse, made infamous by Charles Dickens…

This is no accident. It has been intentional. So, by endorsing the notion that some women are unfit to be mothers, Pause is playing right into the modern day Eugenicist’s hands.

Either the people behind Pause are middle class do-gooders, blinded by their own self-righteousness, or they are complicit in this disgusting social engineering. I think its probably a combination of both.

I’ve given up writing full time to support my partner Nic, who lives with ME and 14 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
Donate Button

Parliament just slapped millions of disabled people in the face

A debate in parliament on Wednesday 5 June showed at best the lack of concern for millions of disabled people. At worst, it is a sign of the contempt hundreds of MPs hold their chronically ill constituents in.

Another day, another debate

A debate on invisible disabilities and access change happened in the House of Commons. It was about impairments that are not always visible in terms of their effects, and what can be done to raise more awareness of these.

Now, don’t misunderstand me. I am the partner of someone who lives with predominantly invisible disabilities and illnesses. So, I welcome any debate into the lives of chronically ill and disabled people and how government and society treats them.

Nic’s story

My girlfriend Nicola Jeffery is just one example of millions of people in the UK ravaged by chronic but often invisible diseases, illnesses and conditions. She currently lives with (yes, it’s gone up again since the last time I wrote):

  • Hypermobile Ehlers-Danlos syndrome (hEDS).
  • Myalgic Encephalomyelitis (ME).
  • Postural Orthostatic Tachycardia Syndrome (POTS).
  • Craniocervical Instability (CCI).
  • Atlantoaxial Instability (AAI).
  • Hypotension.
  • Megaloblastic Anaemia.
  • Peripheral Neuropathy.
  • Chronotropic Incompetence.
  • T3 Hypothyroidism.
  • Mycotoxicosis.
  • Deformations in left foot, left leg shortness.
  • Non-epileptic focal aware and tonic clonic seizures.
  • Polycystic Ovary syndrome.
  • Temporomandibular Joint Dysfunction (TMJ).

Nic is the perfect example of how invisible disabilities can severely debilitate someone’s life. She explained in her usual, eloquent but to-the-point manner in this Twitter thread. I suggest you read the whole thing:

In short, her treatment at the hands of government bodies, medical professionals and society more broadly has been disgusting.

But Nic’s story, which you can read here, is sadly like hundreds of thousands of other people across the world.

So, Wednesday’s debate was an opportunity for MPs to show their concern, understanding and wish for action to happen.

‘Rarely diagnosed’. Rarely debated.

As I tweeted, invisible disabilities are far from ‘rare’ in the UK. As Nic always says, they’re more ‘rarely diagnosed’:

Did MPs turn out in their droves?

Did they hell:

HoC Invisible Illnesses.png

Now, I know what you’re going to say.

All the white bits of paper on the benches are MPs who aren’t physically present but who wish to either vote or make it be known they support the debate. Ironically, they’re ‘invisible’ but still there.

This is not the point.

“Parasites”

As I previously wrote for The Canary, we’ve been here before. A UN committee accused successive UK governments of “grave” and “systematic” violations of disabled people’s human rights. It said they had caused a “human catastrophe”.

But the parliamentary debate into this was almost empty. As I wrote at the time:

empty seats… amplify the impression to the public that disabled people’s rights are a niche issue – one that doesn’t require the full attention of MPs – just a handful to show willing by the party… It gives the feeling that the “grave” and “systematic” violations of… 13.3 million disabled people’s human rights are not really that important…

 

The UN previously said there was a culture in UK society where disabled people were viewed as “parasites, living on social benefits… and [living on] the taxes of other people”. And by not bothering to take half an hour out of their day to sit and listen to a debate over one of the most serious issues in recent history… MPs merely add fuel to this fire.

The invisible disabilities debate was exactly this, with the usual exceptions.

Shout outs and shout downs

The ever-present and indefatigable Labour MP Debbie Abrahams has been a bastion of solidarity with disabled people, and was of course present. Sharon Hodgson and Justin Madders were also there, among others. The SNP’s Carol Monaghan and Angela Crawley were there, the latter making very good points about the Department for Work and Pensions (DWP). Some Tories were present, with Justin Tomlinson representing the government.

But the lack of MPs once again gives the impression that they really don’t care that much. It’s an impression that for many of them is probably spot on. Disabled people, as the UN alluded to, are viewed by many MPs as a burden to be tolerated. They are people who should be kept in the most basic of living standards by the state (if at all) and otherwise forgotten about. Empty benches on this debate were of little surprise.

Underwhelming

Of course, the end result of the afternoon was as underwhelming as the turnout. As Nic tweeted:

Yup, that was just about it.

Forget breaking down the miseducation, prejudice and stigma that exists in the medical world over countless invisible disabilities like ME.

Don’t worry about the scandal of “Fabricated or Induced Illness” (FII) diagnoses, where the state removes children from their parents – often because their disabilities are invisible and bodies like social services think the mothers are making their children’s illnesses up.

Let’s not debate PACE trial – one of the biggest medical scandals of the 21st century that has left people living with ME, EDS, Fibromyalgia and other conditions effectively being told to ‘think themselves better’.

We won’t talk about the scandalously low levels of research funding into diseases like ME, either.

Nor will we mention the barely fit-for-purpose Equality Act 2010, that is even less fit-for-purpose for invisible disabilities.

And let’s ignore the entrenched misunderstanding, abuse and neglect that exists in the very fabric of our society just because people living with invisible disabilities look ‘normal’. From disbelief and accusations of lying to being kicked off accessible seats on buses. It’s there, and it’s not invisible.

Wednesday’s debate was just another example in a long line of parliamentary lip service to disabled people. I applaud the MPs who were present. But the woeful turnout and the limp conclusions offer nothing to millions of people in this country, whom society has thrown on its scrapheap.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly now 13 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
Donate Button

The DWP’s Universal Credit was just saved by Philip Alston

The Department for Work and Pensions (DWP) got somewhat of a gift on Wednesday 22 May. It came in the form of a UN report by Philip Alston. And while much of the media has focused on his scathing criticism of successive UK governments, it missed the most important point. It was that Alston effectively gave the DWP a ‘get out of jail free’ card over Universal Credit.

The DWP and the UN

If you are reading this and don’t know much about the controversial new benefit, then you can read The Canary‘s excellent coverage here. In short, Universal Credit rolls six previous welfare payments into one. But controversy has marred it – from increased food bank use to homelessness. Now, and for the fifth time, the UN has got involved.

Alston is a UN special rapporteur on extreme poverty. He visited the UK in November 2018 on a fact-finding mission. His aim was to see how successive governments’ austerity programme, welfare cuts and Universal Credit had affected people. And on 22 May he released his analysis.

You can read it in full below:

UK Alston Poverty Report Final

As the The Canary‘s James Wright reported, much of Alston’s report was damning. He said that:

14 million people living in poverty, record levels of hunger and homelessness, falling life expectancy for some groups, ever fewer community services, and greatly reduced policing, while access to the courts for lower-income groups has been dramatically rolled back by cuts to legal aid.

He also noted [pdf, p5]:

It might seem to some observers that the Department of Work and Pensions has been tasked with designing a digital and sanitized version of the nineteenth century workhouse, made infamous by Charles Dickens…

But Alston also focused on Universal Credit.

“Universal Discredit”

He talked [pdf, p11-14] about the benefit’s “shortcomings”, including:

  • Food bank use increasing where the DWP has rolled it out.
  • Government treating claimants like “guinea pigs” with its “test and learn” approach.
  • Ministers dismissing his concerns.
  • The “perverse” and “catastrophic” five-week payment wait.
  • “Punitive” sanctions.
  • The flaws in Universal Credit being online only.

But he also had some praise for the benefit. He said [pdf, p11]:

Consolidating six different benefits into one makes good sense, in principle.

And he noted [pdf, p4] a:

welcome increase in work allowances, as a consequence of which an estimated 2.4 million households will be better off in 2019,10 and some 200,000 people will rise out of poverty.

But overall, he was highly critical. Problem being, that Alston merely scratched the surface of the catastrophe.

A fault in his argument

By agreeing with the benefit in principle, he fails to understand that Universal Credit is designed to be punitive, vicious and chaotic. This is not government error or failings. And it will not change.

It’s a very concerning flaw in his analysis which in some respects makes much of his other commentary redundant. Here’s why I think that.

A potted history

I would urge you to read here a potted history of Universal Credit I did for The Canary. But, in short, as I wrote:

Universal Credit was the brainchild of [Iain Duncan Smith] and his think tank [the Centre for Social Justice (CSJ)] along with some people who are, essentially, Christian fundamentalists.

 

The overriding notion behind it? That everyone who can do even the smallest bit of work, should. This would, in turn, end welfare ‘dependency’. The thinking was also to reinstall marriage as central to society. All this would herald a return to a Victorian-like era; one where charity and philanthropy support sick, disabled and poor people – not the government.

I continued by explaining that the first major report by the CSJ in 2006, for the opposition Tory Party under David Cameron, outlined that:

poverty and welfare dependency were not due to capitalism’s inequalities. But that poor people and their reliance on welfare existed due to “pathways to poverty”: “family breakdown, education failure, economic dependence, [welfare] indebtedness and addictions”. Solve these, and everyone has “the chance to climb the ladder”, as the report put it

 

Central to this was ‘dynamic modelling’, the idea of creating a system that changed people’s behaviour to get them into work (see Kitty Jones’s excellent work on “nudge theory”). Essentially, this meant cutting people’s money so they had no choice but to get a job. Or, in the case of in-work benefits like tax credits, cutting them as people started earning more.

A digital workhouse

We’re back to Alston’s “digital and sanitized” 19th century workhouse analogy again. That is, Universal Credit is the digital equivalent of a workhouse. It will push all the people who were of no use to the system (that is, had little monetary value) under one roof: severely disabled, sick and chronically ill people, those living with mental health issues, single mothers and the ‘work-shy’. All housed in a virtual workhouse. Segregated from the rest of society. A truly dystopian nightmare.

Propaganda overdrive

Meanwhile, and as if by magic, to coincide with Alston’s report release the DWP launched it’s heaviest propaganda offensive yet: a massive splash in the Metro:

Of course it’s not magic. It’s part of an ongoing campaign by the DWP to sell its most draconian policy as something positive. Campaigners have been vigorously opposing Universal Credit for a while, now. But if you believe YouGov polling, neither the DWP nor activists are shifting public opinion on the benefit.

Public confusion

The pollster reported in October 2018 that public opinion over Universal Credit was divided:

Universal credit charts-01.png

The confusion and working class division over Universal Credit is evident on our estate.

On the one hand, we have a friend who works in the gig economy and is struggling with the tapering of the earnings floor under the benefit.

Then we have another friend, a single parent of three, who thinks Universal Credit is a great idea. Despite still using food banks they are all for it.

Failing? It’s intentional.

Alston said in his report that with Universal Credit, successive governments were guilty of:

failing to properly design a system that is meant to guarantee the social security of so many…

On the contrary. Successive governments and the unelected civil servants have designed Universal Credit perfectly. And its roll out is going pretty well to plan.

It was always meant to be chaotic. The more confusion and difficulty experienced by claimants, the more potential claimants would be put off applying for it. It’s the same notion of poor prison conditions being used as a ‘deterrent’ to put people off committing crime.

So, the worse Universal Credit is, the more people will fall off the edges of society or get any work they can. It will leave those in the greatest of need reliant on it, stuck in this virtual workhouse.

Half-baked analysis. Game over?

Alston has done nothing to hasten the benefit’s demise. In fact, all he’s done is given the government and DWP ammunition to tinker a bit more around the edges if they want to. His report comes in a long line of UN reports and a Human Rights Watch one just this week. All were scathing but in reality all were useless.

His half-baked analysis and ironic tinkering around the edges (which Alston criticised the UK government for doing) is of no help to the millions of people suffering in the UK. It will be forgotten in a matter of weeks. And the barbaric roll out of the dystopian Universal Credit will continue.

It is again down to activists to spread the word in their communities, apply pressure on political parties and ultimately do everything they can to bring about the demise of this wicked, nightmarish horror.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly now 13 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
Donate Button

At #PMQs Theresa May threw millions of disabled people under a bus

A question from a Labour MP at Prime Minister’s Questions (PMQs) on Wednesday 8 May gave Theresa May the chance to throw millions of disabled people under a bus. But it also exposed an under-reported catastrophe for potentially hundreds of thousands of chronically ill people.

An “isolated case”?

Labour MP Sandy Martin raised the issue of a disabled constituent with a disabled child who had their benefits stopped. The mother lived with myalgic encephalomyelitis (ME) and fibromyalgia, and her child had hypermobility, therefore possibly a connective tissue disorder.

Listen to Martin’s question and May’s response below:

 

 

Martin took to Twitter to imply May thought his constituent’s case was “isolated”:

The PM may well indeed have implied Martin’s constituent’s case was ‘isolated’. But the reality in the UK for people living with ME, fibromyalgia and hypermobility/connective tissue disorders is very different.

A chronic epidemic?

Here are details about ME, fibromyalgia and connective tissue disorders. But all come with symptoms of generalised pain, chronic fatigue and cognitive impairment. All can be debilitating in many cases, leaving some people house or bed bound. And all are poorly misunderstood by medical professionals, government agencies and society.

Estimates put the number of people living with fibromyalgia between 1.5-2 million; the number of people living with ME at 250,000, and there are no estimates for the number of people living with connective tissue/hypermobility-related illnesses – although the Ehlers-Danlos syndromes (EDS), for example, are thought to affect 1 in every 5,000 people. So that’s around 13,000 individuals in the UK.

So, let’s use a ballpark figure of around two million people in the UK that live with either fibromyalgia, ME or connective tissue disorders. It’s probably an underestimate.

Just how many of these people does the Department for Work and Pensions (DWP) give benefits to?

The official figures show…

Based on my own analysis of the DWP’s data website Stat-Xplore the most recent figures show:

  • 15,936 people with chronic fatigue syndrome (CFS) got Personal Independence Payment (PIP). The DWP uses the term CFS, not ME.
  • 73,560 people with fibromyalgia got PIP.
  • 11,349 people with connective tissue disorders got PIP. The DWP does not include EDS specifically in its data.
  • 16,305 people with “Chronic Pain syndromes” (which would cover CFS and fibromyalgia) got Disability Living Allowance (DLA).
  • 91,164 people with “Diseases of the Muscles, Bones and Joints” (which would cover connective tissue disorders) got DLA.
  • 270,636 people with “Diseases of the Musculoskeletal System and Connective Tissue” (which would cover all of the above) got some form of Employment and Support Allowance (ESA).

That equates to the DWP giving benefits to just under 500,000 people with ME, fibromyalgia and connective tissue disorders – out of around two million people. Except it’s a gross over-estimate, as many more illnesses are grouped into some of the categories.

You can view the data I used here, here, here and here.

It should be noted that these figures are for claimant’s main reported disability. So there may be some people who get benefits with another condition aside from ME, fibromyalgia or a connective tissue disorder. But the figures still raise some worrying questions.

Shocking abandonment?

What we do know is that out of at least 250,000 people living with ME, the DWP gave PIP/DLA, the main disability benefits, to under 30,000 of them when it was their main disability. That’s just 12% of people living with this debilitating disease. To me, this doesn’t sound right.

It’s even more damning when we know that between 35,000 and 70,000 people in the UK have “severe” or “very severe” ME. This often leaves people bed-bound day in, day out. But it appears the DWP does not even give all of these people benefits.

Of fibromyalgia, possibly 80,000 people at best got PIP/DLA for it – out of 1.5-2 million people, or 4-6%.

We don’t know how many people with EDS get benefits, as the DWP doesn’t bother to even recognise it as a separate medical condition.

For ESA, if you put my ballpark two million figure of people in the UK living with ME, fibromyalgia and connective tissue disorders into the DWP’s figure, it would mean that only 13% of these people got benefits for these conditions. It seems unfathomable to think that this is correct.

Rejected. Refused. Millions missing.

So, Prime Minister, was Martin’s example isolated?

Your government’s own figures would suggest otherwise. It’s impossible to imagine how many people living with ME, fibromyalgia and connective tissue disorders do not get the benefits they are entitled to.

The ME Association reported in 2010 that:

our experience as a support charity is that people with ME/CFS have a great deal of difficulty in obtaining sickness and disability benefits when benefit applications are first assessed, or are later re-assessed – even when they are fully supported by their GP or consultant.

Although initial claims are often rejected, there is a high rate of success (around 40%) on appeal – indicating that eligibility criteria and medical assessment procedures are poorly designed for people with this illness…

The refusal rate (for ESA) here is probably even higher than 75%…

It seems that very little has changed. But May probably doesn’t see the irony that, during ME Action Network’s #MillionsMissing campaign week, she effectively ignored the hundreds of thousands of chronically ill people missing from the welfare system. She may as well have thrown them under the nearest bus.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly now 13 other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
Donate Button

The propaganda war on chronically ill and disabled people just went up a gear

Another week and the media dropped another heavy dose of propaganda against chronically ill and disabled people. Nothing new under the sun, I hear you cry. Except there is. Because this time it shows a clear, coordinated pattern emerging in this ongoing smearing of a whole community.

Groundbreaking research?

On Monday 29 April Stanford University in the US published new research into myalgic encephalomyelitis (ME).

As I previously wrote for The Canary:

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

 

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance / problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
  • Hypersensitivity.

 

But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

You can read my full body of work for The Canary on ME here and there’s also plenty of content on this website.

This is not a medical article, so I won’t go into the details of Stanford’s research – you can read about that here and here. But in short it could pave the way for a proper “marker” for ME – that is, proof the disease exists.

And when compared to current UK mainstream medical thinking, it is infinitely better.

PACE trial

Currently, the NHS’ approved treatment is based on the so-called “PACE trial”. Again, as I previously wrote for The Canary, the trial:

was a study into treatment for people living with ME. Its results claim that people living with ME can improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).

 

The results of the £5m trial, part-funded by the UK Department for Work and Pensions (DWP), were originally published in the Lancet in 2011. But they have been dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.

 

In the UK, CBT and GET are still the NHS’s approved treatments under guidelines from the National Institute for Health and Care Excellence (NICE). NICE is undertaking a review of this. But this has proved controversial. Because as ME Action UK reported, among the people sitting on the review committee are a co-author of the PACE Trial and other contentious medical professionals.

You can read my full body of work for The Canary on PACE trial here and on this website.

So, Stanford’s research, potentially showing that ME is a disease to which endless amounts of CBT and GET would be ineffective, is important. So important that a lot of the media reported on it. But three outlets in particular made a point of pouring as much scorn on the research as possible.

Pouring scorn…?

Reuters, the Sun and the Telegraph among others all covered the story. I note these three outlets specifically because each of their articles all had several common denominators. All of these point to the story coming, in part, from one source.

All quoted psychiatrist, president of the Royal Society of Medicine and government adviser Sir Simon Wessely. He was also involved in PACE trial and is an advocate of CBT and GET.

They all used parts, or all of, the same quote from him; that is:

There have been many previous attempts to find a specific biomarker for CFS. The problem is not differentiating patients with CFS from healthy controls. The issue is can any biomarker distinguish CFS patients from those with other fatiguing illnesses?

 

And second, is it measuring the cause, and not the consequence, of illness? This study does not provide any evidence that either has finally been achieved.

Both the Sun and the Telegraph quoted other medical ‘experts’ as well as Wessely. Reuters just used him alone, saying his quote came from an “emailed comment”.

All were published within three minutes of each other at around 8pm BST.

And they all went with calling the disease “chronic fatigue syndrome” and “CFS” first, ME second.

So, why were there many similarities in the stories? Because the source for them all was the same. It was the industry PR agency the Science Media Centre (SMC).

A coordinated smear…?

For example, the writers of the articles lifted all the ‘expert’ comments from Wessely and others directly from a press release by the SMC. Of note is that both Reuters and the Telegraph gave only negative comments from the SMC press release.

The Sun, by all accounts, almost gave the game away as to where the comments had come from by including a positive one from the SMC press release. Whoops!

It also leads with “chronic fatigue syndrome” and “CFS” first, and ME second. That, in my opinion, is a now standard tactic to lessen ME as a debilitating disease and keep it in the realms of the psychosomatic in the mind of the public. CFS already has social connotations – ‘Yuppie Flu’, for example.

The fact all three articles went out at 8pm, bar Reuters at 8:03pm, is another giveaway. The website PNAS published the research at 8pm UK time, with Stanford University tweeting its press release at 8:11pm.

That’s quite a remarkable turnaround time for Reuters, the Sun and the Telegraph to analyse complex research, get comments from ‘leading’ UK ‘experts’ and publish – all in a matter of seconds.

Except of course they didn’t do that.

The MSM/SMC strikes again!

The SMC would have had pre-release access to the Stanford paper. It would have gathered the quotes, sent those along with its analysis of the research to its contacts at every major media outlet, and waited for the ball to get rolling.

Stanford’s research was probably embargoed (that is, not allowed to be published until a certain hour) until 8pm UK time. Although I know for a fact PNAS accidentally published it earlier, at around 10:30am – and then promptly withdrew it. Accident or interesting? I’ll leave that up to you to decide.

So, as soon as that embargo lifted, Reuters, the Sun and the Telegraph had their complete pre-scripted articles ready to go.

I deal with embargoed press releases, research and announcements week in, week out. I know how this rolls. And it rolls exactly as above.

But here’s the thing. We’ve been here before with the SMC and ME.

The merry-go-round continues

Just last month, I wrote extensively about how the SMC was coordinating a media campaign in support of PACE trial author Professor Michael Sharpe and the trial, and against people living with ME, their advocates and campaigners.

Central to this was Reuters‘ Kate Kelland (author of the latest Stanford article, too), who has a history of publishing “seeded” stories for the SMC – from GMO crops to fracking. Meanwhile, it effectively admitted [pdf, p4] to such, and also that it would support professionals like Sharpe if they were under attack.

And so, with Stanford University publishing new positive research, the media merry-go-round continued. If you ask me, it has less to do with people living with ME and more to do with UK regulator NICE currently reviewing treatment guidelines for the disease. PACE trial has to be maintained, so best get the smears in against people who disagree with it quickly – in case people start believing them!

But why does this matter? This is how the media works, after all.

It matters because the SMC and its advocates are pushing a damaging, junk science and political agenda.

Political agendas

It’s one which is abusive and harmful to patients. It is also one which has no basis in scientific fact.

But it has plenty of basis in furthering the careers of its proponents, propping up the plans of big government and big corporations, forcing sick and disabled people into work and ultimately creating a world where we’re all reliant on popping pills and seeing shrinks – as opposed to actually being healthy or being given proper treatment if we’re not.

And our irresponsible, servile media plays a major part in keeping this agenda going; as it does with everything that’s in the interests of the powerful but damaging to the rest of us.

Meanwhile, with #MEAwarenessWeek and #MillionsMissing events fast approaching and the ongoing #MAIMES campaign looking promising, expect the media circus to continue.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly a dozen other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
Donate Button

Happy Easter. Unless you’re living with ME.

Chocolate eggs? No. A roast dinner with the whole family around the table? No. Binge-watching movies on the sofa? No. Going out drinking and partying? No.

Happy Easter for many of you, I’m sure. But not if you’re living with an illness that’s ‘all in your head’.

Myalgic encephalomyelitis

As I previously wrote for The Canary:

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance / problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
  • Hypersensitivity.

But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

You can read my full body of work for The Canary on ME here.

Nicola’s story

As I’ve previously written, my girlfriend Nicola Jeffery lives with ME, along with a host (now ten in total, as it happens) of other conditions, diseases and illnesses:

She is also now under clinical investigation for:

• Hypothyroidism.
Sheehan’s Syndrome [pdf].
Hypochlorhydria.
Chronotropic Intolerance.

I’ve written extensively about her story to this point. You can read that work here.

So, what does our Easter look like? Probably a world away from many people’s. But also very similar to Easter for millions of chronically ill people.

Just another week in the Jeffery-Topple household

Around 5am on Wednesday 17 April Nic started vomiting. This was followed by diarrhoea. This continued until around 2:30am on Thursday. For the rest of the day she fell in and out of sleep. It’s now Friday 19 April at 1:30pm and she’s eating something for the first time since Tuesday. But only half managed it and has gone back to bed.

Her blood pressure fell to 78/33 at one point, which is worryingly low. During this time she also had three suspected focal seizures. I say “suspected” because no medical professional is able to explain what they are, except they present like them. No tonic clonic this time, though. So we’re grateful for small mercies.

“Why didn’t you call an ambulance?” I hear you scream down your devices.

For numerous reasons. Not least because this bout of unexplained sickness has happened countless times before. But also because we know that a hospital would do little that we weren’t doing at home. In fact, they may in the long term have made the situation worse. If you’re wondering why I think that, check out the reasons why we’ve switched to a paleo-keto diet. All will be revealed. Plus the likelihood of mental health being brought into the equation. Our glorious NHS, hey…?

We’re now weaning her back onto food, and will start reintroducing the 17 different tablets/oral/intravenous solutions she’s on a day, in time.

So, Easter has gone out of the window for us. But for Nic, and millions of people like her, it was never actually in the window in the first place.

Sunday roast? No chance.

If you’re non-disabled, you probably relish the thought of a huge Sunday roast with all the family. If you’re living with ME this could be your worst nightmare.

Maybe explain to people why you can’t eat half the food on your plate due to your socially damaging, highly restrictive diet.

Try eating all that when you have impaired digestive transit. Or if you’re struggling to swallow. Maybe if you have hypersensitivity to taste.

Also, try eating all of that while numerous people talk around a table and you’re hypersensitive to sound. Then try it when your cognitive function is so impaired you can barely follow one person in conversation, let alone a whole group of people.

This, of course, all presumes your family hasn’t effectively disowned you because they think your illness is ‘all in your head’ and you just need to ‘pull yourself together’.

Enjoy your lamb.

Easter eggs? Jokes.

If you’re non-disabled, the best part of Easter may be chocolate eggs. If you’re living with ME, they could be torturous for you.

Histamine intolerance may mean you can’t even eat chocolate. Mast cell activation syndrome could mean it will trigger an allergic reaction in you. And if you’re on a socially damaging, highly restrictive diet, we’re back to the sugar problem again.

Meanwhile, you have to have the strength in your hands to remove the foil wrapping and then break the chocolate in the first place.

All that of course assumes that you even have the money to buy Easter eggs. Try getting the Department for Work and Pensions (DWP) to give you benefits when your condition is still considered part-psychological by much of the medical community.

Hope you have a good sugar rush.

Binge TV? Out of the question.

If you’re non-disabled, you many plot yourself on the sofa and watch endless movies for much of the weekend. If you’re living with ME, this could be near-impossible.

Try being in any other position except lying down for a long period of time when every part of your body aches, you feel like your walking under water and you have a constant fog of light headedness.

Maybe try and sustain your concentration for more than just the news when your cognitive function is so impaired you can’t remember what the weather is going to be like from one day to the next.

Then have a go at enjoying a film when the slightest laugh, scream or groan from people feels like the noise of a high speed train right next to you. And throw in the noise of the television and the strain on your eyes for good measure.

I do hope you have fun watching your Hollywood brain-bleach.

Get ready to party? Not here.

If you’re non-disabled, you may go out over Easter to the pub or a club. Or, like me and Nic were, put on the guest list for a concert by a rapper like Lowkey. If you’re non-disabled, this would be impossible.

Attempt to get showered and dressed when your body is so weak that even going to the toilet exhausts you for hours afterwards. Try putting your make up on when your hand to eye coordination is screwed. Not that you’d be able to sustain the holding up of your arms for that long, anyway.

Try drinking alcohol when you know it will leave you even more bed-bound than you were already. Oh, and try affording alcohol under the DWP.

Maybe you’d like to go to a venue where there are going to be hundreds or thousands of other people, exposing you to their germs, which could make you seriously ill. Hundreds or thousands of people all ready to brush past you or bump into you, but in doing so leaving you in agony.

Or try dealing with the same issues you had eating your Sunday roast with a small group of people all in intense conversation – but multiply it by hundreds and throw in extremely loud music for good measure.

Oh, and try all of this when you can’t use public transport due to the infection risk, the danger of physical damage and the lack of accessibility for chronically, invisibly ill people. And if you want to try and get a taxi to and from where you’re going to, we’re back to the DWP issue again.

I hope your hangover is worth it.

Happy Easter.

Ultimately, try doing all of these things when you constantly feel like you have the flu, never have any energy nor have the cognitive function to decide whether to even do them or not.

Then try doing them when much of the medical profession and state systems disbelieve you, leaving you with no support except other people in exactly the same boat. Even friends and family will only tolerate your inconsistency, the consuming nature of your disease and your inability to do what most people consider ‘normal’ for so long. Gradually, knocks don’t appear at the door. The phone slowly stops ringing. Messages are left unreplied to.

And ultimately, trying doing all of this with the overwhelming feelings of guilt your disease leaves you with.

So, no. There is no Happy Easter for millions of chronically ill, disabled and sick people. There’s just another long weekend, spent fighting not only their own bodies but also a system and society that’s not designed for them to fit in to. Let alone live in.

I’ve given up writing full time to support Nic. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
Donate Button