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Levinovitz argues that overvaluing patients’ lived experience has hampered attempts to understand Long Covid. This informs his section on exercise treatments. He writes, ‘The relationship between exercise and post-exertional malaise is a case study in how scientific results can clash with believing patients.’ He claims there’s no evidence that exercise leads to post-exertional malaise (PEM) and highlights multiple studies to support this. He explains that Long Covid advocates oppose exercise treatments because of their perceived potential for harm, but he doesn’t explain why, thereby framing these concerns as baseless and unreasoned.

Perhaps because of the dim view Levinovitz takes of lived experience and the patient perspective, his article does not mention anyone with an infection-associated chronic condition (IACC) who drastically deteriorated following GET. These are not hard to find within the online community. Advocates like Anil Van Der Zee, Adam (ABrokenBattery), and Lizzy Horn have all shared their experiences of becoming housebound or bedbound for a decade or more following GET. In light of their stories, and those of many others, advocates’ concerns around GET start to seem less baseless than Levinovitz suggests.

To discuss whether graded exercise is safe for people with IACCs while ignoring those whose lives it has devastated is obscenely disrespectful. Yet every other piece like this, from The New Republic to New York Magazine, has done the same. They are real people, not data points, and that seems to be the very reason these journalists don’t consider them worth mentioning. They can point to a few studies which appear to support their argument, and that’s enough. Levinovitz actually goes further, writing that people sharing their bad experiences with GET is problematic because it stymies further exercise research. He writes that it’s ‘challenging to find a large number of subjects, because patients have read about the perils of exercise online and don’t want to enroll.’ I’d argue that patients have every right to share their experiences, and that journalists, clinicians, and researchers should pay attention. The problem is that aggressive implementations of GET, which has long been vaguely and variously defined, have made some people worse, not that those affected have chosen to share their experiences.

However, we don’t need to look to the online community to find that overexertion can be risky for people Long Covid and other IACCs; it’s right there in the article. It features a man with Long Covid whom Levinovitz calls Larson. Larson ‘pushed through until…he did some construction work around the house. The exertion was too much. His body began to shut down, and two weeks later Larson was bedbound.’ This happened to me and countless others - repeatedly pushing through symptoms, crashing consecutively, until one day something snapped and we ended up bedbound. Although it was not through a formal exercise programme in Larson’s case or mine, it shows that overexertion can cause drastic deterioration in people with IACCs, refuting Levinovitz’s claim that advocates have no rational reason for concern.

I’m sure Levinovitz would push back by saying that any exercise should be cautious and patient-tailored, which prevents major deterioration. But as I’ve said before, these are gauzy terms which mean little in practice. In a patient-tailored exercise regime, clinicians can still tell patients to push through their symptoms, making it risky. And indeed, they often have. In an ME/CFS training video for UK general practitioners (GPs) from the 1990s, a doctor tells a patient to do a 10-minute walk every morning and evening ‘even if you feel absolutely exhausted’. They would probably claim that was patient-tailored, because if the patient had been milder, they might have told them to go for a run instead. But it’s still bad advice and could make someone worse. If you feel absolutely exhausted with Long Covid, you should rest. Like I said, not doing so is a key reason I ended up bedbound. The doctor in the video also recommends a fixed amount of exercise, so proponents of ‘patient-tailored’ or ‘symptom-titrated’ GET could at least acknowledge that it often hasn’t been done that way in the past, and that patients’ concerns are therefore justified.

Levinovitz writes that ‘believing patients about the reality of their symptoms is not the same as believing them about the cause and resolution of those symptoms, and conflating the two can lead to serious problems.’ I’ve seen this argument before, but the reality is messier. Beliefs about cause and resolution can create disbelief about the reality of symptoms. When someone believes the problem is dysfunctional illness beliefs, health anxiety, or physical deconditioning, they often see a patient’s inability to do an activity as a choice they’re making not to try. Many healthcare professionals, including within the NHS ME clinic, seemed at times to view me as a petulant child refusing to eat his vegetables. I remember reading my medical notes after I got better and being shocked. The ME nurses complained I’d ‘only allowed them to be there for a few minutes’ after their visit, which led to a months-long crash (they’d peppered me with questions when I could hardly speak, and kept going after I told them I was struggling). I’d been ‘unwilling to engage with any suggestions to make progress’ for declining the psychiatrist’s suggestion to go downstairs and have dinner with my family as I lay unable to sit up, speak, or feed myself. I’d ‘chosen not to attend’ the meeting about my care virtually, even though I’d been unable to take my eye mask off for more than a few seconds in a dark room, or tolerate sound for more than a couple of minutes. I have many more examples, as do countless others who’ve been there.

When it comes to GET, this becomes especially pernicious. If the therapy fails to increase your exercise tolerance, or reduces it, a facilitator who believes in a psychosocial model of IACCs may simply believe you’ve stopped trying. In their view, there are two possible outcomes: it works, or you give up. ‘Refusing to engage,’ they write in your medical notes, after you did everything they said and ended up worse. ‘We can’t help unless you’re willing to work with us,’ they say in a patronising tone as you lie struggling to speak, move, or find the will to keep on living. ‘You’re supposed to engage with the service,’ I was told when I said I couldn’t get to the bathroom once. ‘You’re letting yourself down,’ I was told another time. This kind of thing can absolutely happen under a ‘patient-tailored’ regime. So, as you can see, the distinction between believing a patient about the reality of symptoms and believing them about the cause and resolution of symptoms is not so clear in practice. And again, it illustrates that patient concerns around exercise regimes are not baseless.

As I wrote in my first critique, Levinovitz’s claim that ‘advocates generally agree that people with this symptom (PEM) should avoid exercise at all costs’ is an exaggeration. He also quotes Andrea Tryfonos, the lead on a Long Covid exercise trial which he references, as saying, ‘avoiding exercise is, in itself, an extremely risky intervention.’ A companion commentary to that study criticises health authorities for cautioning ‘against graded exercise for treating patients with postexertional symptom exacerbation (PESE)...despite the well-documented deleterious effects of physical inactivity.’ To be clear, patients do not face a stark choice between GET and complete physical inactivity. There’s a middle ground where patients do as much physical activity as they can without worsening their condition. NHS Long Covid clinics, flawed though they are, use an ‘activity management approach’ which is supposedly about doing exactly that. So while this polarised framing makes Levinovitz’s piece sound more compelling, and supports his framing of advocates as irrational zealots, it doesn’t map onto reality.

Levinovitz claims we have overvalued lived experience in trying to understand Long Covid. But his lack of lived experience and omission of the patient perspective undermine his article the most. It bleeds through his oversimplified arguments about exercise treatments and what it means to believe patients.

Ultimately, he fails to give advocates’ concerns around exercise a fair hearing. Instead, he presents an extremely one-sided picture and frames advocates as irrational, anti-science zealots, as so many journalists have before. It would have been much more informative for the wider public (although less titillating) if he’d avoided defaulting to that stereotype, and explored in detail where the vehement opposition to exercise treatments stems from.

Anyway, that’s it. I look forward to never reading this piece again.

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Henry and I first spoke six months ago over Zoom. A mutual friend, who sadly still has very severe ME, had put us in touch. We live fairly close, but at the time he wasn’t well enough to meet in person. We chatted about our illness trajectories, how we were managing our symptoms, and football. When I recently returned from my travels in Latin America, I was thrilled to hear he’d improved - from 20% to 40%, I think he said - and wanted to meet up.

Henry has been ill for six-and-a-half years. Before ME, he’d been very active, working as a sports massage therapist, trying to set up his own company, and loving life. Over our Zoom call and texts, I sensed this vigorous energy was still there, despite everything the condition had taken from him. He’s tried a long list of things to get better. Like many with ME and Long Covid, he’s a living rebuttal to the idea that we are lazy, malingering, or not trying hard enough.

We met in a town called Macclesfield, in between where we both live, and chatted for an hour and a half over coffee. I haven’t met many others with ME in person - many are too ill, so most of the community exists online. But when I do, there’s an immediate rapport. Before we speak, we can guess what the other has been through: the confusion when the illness hit them; the fear when it wasn’t gone after a few weeks, then a few months; the slow, painful acceptance that they had a serious chronic condition with no guarantee of recovery; the crushing disappointment of going to the doctor and realising they didn’t have a clue; the exasperation of trying to explain the crushing symptoms to loved ones and only finding flimsy terms like ‘fatigue’ and ‘brain fog’.

Not being able to share these experiences with people who’ve been there leaves emotional baggage unprocessed. So when Henry and I met, the dam burst, and many pent-up opinions, grievances, and frustrations poured out. We talked about our lives before and after the ME wrecking ball, what’s worked and what hasn’t, and those who showed up for us.

As I write this, I’m trying to recall the specifics of our conversation, but I can’t. What sticks with me is not what we said, but the feeling of resonance, the rhythmic yes, yes, yes that ran through my mind as he said things I’d long felt, and the welling up of thoughts I wanted to get off my chest, which he often responded to with a wide-eyed ‘Yes!’

ME can be very isolating. For many, it’s made worse by being too sick to fully engage with the community, the only ones who truly understand what it’s like. But there are people everywhere hidden away with ME, some much closer than you might think. I know of quite a few others who live nearby, and whoever I talk to about ME knows someone with it - hardly surprising when the UK prevalence estimate is 404,000, and 1.2 million if you include Long Covid.

Earlier, I mentioned the mutual friend with very severe ME who put Henry and me in touch. She lived a few streets away when I was very ill and had been in the year below me at school. She reached out after I wrote about my experience for #ThereForME. If not for that, we’d never have known someone was going through the same thing so nearby, and I’d never have met Henry.

So, yeah, I met a friend for coffee. Not something I’d usually feel the need to write an essay on. But after many years living with a condition that so few understand, chatting about it with someone who does, especially in person, can be surprisingly cathartic.

We’ve agreed to meet up again soon.

You can subscribe to Henry’s Substack, @thehealingarena.

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In the first main paragraph, Levinovitz writes, ‘BMJ’s systematic review of ways to treat long Covid lists two as supported by moderate evidence, cognitive behavioral therapy and physical exercise.’ He then reveals that he attended a Long Covid Conference where ‘the world’s leading scientific authorities brought up exercise only to warn against it.’ But he gives no reason why they may have done so. He refers to the BMJ’s systematic review, but not to the UK’s 2021 review of the NICE guidelines for ME/CFS, which found all studies into graded exercise therapy and CBT to be of low or very low quality.

The omission of anything scientific that undermines his argument (that brain retraining and exercise may hold the answers to infection-associated chronic conditions (IACCs)) is a theme throughout the article. It is also common among proponents of these treatments more generally, who often lean on a false dichotomy between evidence-based science and patient activism to make their case.

When Levinovitz discusses the PACE trial (I know - not again!), he simply writes that it drew ‘positive results’. He does not provide any information that would allow readers to make up their own minds about this. He then writes, ‘Among patients and advocacy organizations, the reaction was uniformly negative.’ He doesn’t mention the list of credible scientists who criticised the study here. Instead, he buries it in the following paragraph about David Tuller, saying he ‘collected harsh comments from physicians and scientists’. The rejection of PACE by many in the scientific community, and by the NICE review, deserves a standalone paragraph. It’s more important than the reaction from patient advocates. But Levinovitz’s framing suggests the opposite.

Also, ‘harsh comments’ makes these professional criticisms sound like unwarranted personal attacks. But one of Levinovitz’s examples is ‘blatant methodological lapses’. To me, this seems an objective and reasonable thing for a scientist to say about a study they consider flawed. It frames any scientific opposition to exercise or brain retraining as ill-intentioned, motivated by malice. For decades, proponents of these methods have repeatedly deployed this technique against patient-advocates with considerable success. But it’s weird to see them use it against eminent scientists like Dr Ron Davis for comments that are clearly not personal attacks. Earlier in the article, Levinovitz does not describe Dr Becca Kennedy’s accusation that ‘scientists and clinicians who champion biomedical explanations [rely] on shoddy, ambiguous research’ as a harsh comment.

Levinovitz writes that ‘Every mind-body researcher [he] talked to has dealt with intimidation tactics.’ And to be clear, I vehemently oppose such tactics in any context. But to evidence this, he refers to a Norwegian pediatric cardiologist who has studied mind-body interventions for ME as saying they are ‘monitored by specific patient groups’ who ‘do everything to try to, for instance, find formal flaws in our research project.’ Erm, OK? Finding ‘formal flaws’ in research doesn’t sound like intimidation to me. It sounds like the proper way to go about it.

Proponents of mind-body theories have long conflated acceptable and unacceptable forms of advocacy as a way of deflecting legitimate criticism. And Levinovitz does the same. Death threats, which are indefensible, are not the same as pointing out a study’s methodological flaws or even calling for a retraction. But they lump them all together as examples of harassment, intimidation, and abuse. To some in the mind-body field, it seems that there is no opposition, no criticism, from the IACC community they consider fair. That patients could not possibly understand ‘evidence-based’ science. That we should shut up, sit back in the patient’s chair, and accept what we’re given from people who do.

Concerning PEM, Levinovitz writes, ‘Advocates generally agree that people with this symptom should avoid exercise at all costs.’ This is an exaggeration. Advocates generally agree that patients should avoid exercise which exacerbates their symptoms, which is very different. But again, saying ‘at all costs’ makes advocates appear unreasoning and unserious, so he goes with it.

Levinovitz’s conclusion conflicts with the rest of his article. He writes multiple times that people with IACCs have long been dismissed and disbelieved, but overall his tone is unsympathetic towards advocates. But suddenly, in the closing paragraphs, he writes, ‘the fault does not lie with advocates but with our culture.’ He explains that psychological explanations for IACCs create real risks for patients, such as losing disability insurance and even custody of their children. ‘Huh?’ I thought as I read it. It’s a great point, but it wasn’t the impression I got from the rest of his piece.

In the final paragraph, he elaborates: ‘This is the real climate of fear that needs to be addressed. Fear of being labeled lazy and crazy. Fear of losing disability insurance. Fear of being blamed for your own suffering. Fear of having your children taken away.’ I agree. But as a general rule in writing, the ending should leave your central argument ringing in the readers’ ears. And as I understood it, this was not his central argument at all. He’d spent almost the entire preceding 7,000 words framing those who promote brain retraining and exercise as victims of patient advocates, not patients generally as victims of societal stigma. It felt very incoherent.

For an article that claims to contain the truth about Long Covid and frames any opposition to this ‘truth’ as lacking scientific backing or sound reasoning, Levinovitz’s article lacks objectivity and balance. Based on the ending, I’m going to guess that, late into his draft, he realised that some patients’ vehement opposition to exercise and brain retraining is rooted in more than some crazed, inexplicable anti-psychiatry bias (who’d have thought?) and rejigged his ending.

In future, I’d like to see more longreads framed around Levinovitz’s conclusion: the decades-long dismissal, disbelief, and mistreatment of people with IACCs by society and the medical profession, and the harm that their anti-psychiatry bias does to patients. That gets much closer to the root of the problem.

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As most readers will know, on June 1 Wired magazine published an article titled, ‘The Painful Truth About Long Covid’ by Alan Levinovitz. It promoted brain retraining as a treatment, argued we need more exercise studies, and claimed patients are silencing those who share the author’s views. I’ve been taking a break from everything during my trip, so I only read it the other day. As researchers and advocates have already posted lengthy critiques, I’m going to do something a bit different and share what I like about it. I will, however, post a critique in my next blog.

Early on, Levinovitz describes the reality of very severe ME. He shares the story of a 37-year-old man ‘lying motionless and mute in a darkened bedroom for months, pallid and emaciated, unclipped nails like claws, sucking pureed food from a syringe, dependent on a bedpan.’ I was glad to see this depicted in a widely read magazine. If there’s one thing about ME that I wish the general public knew, it’s how the most severely affected live. It’s unimaginably awful, yet few outside our community know that very severe ME patients exist. To improve their care, we need that to change. More public awareness of very severe ME also benefits mildly and moderately affected patients, because it can persuade some members of the public who are otherwise disbelieving that it is a real and serious condition. ‘Well, no one would choose that,’ they’re forced to agree.

Levinovitz also acknowledges that ‘People with post-acute infection conditions are routinely traumatized by medical professionals and the general public.’ Similar pieces have somehow managed to entirely ignore the 40+ years of disbelief, dismissal, and mistreatment that people with infection-associated chronic conditions (IACCs) have endured. So this is a significant improvement.

In his conclusion, Levinovitz states that ‘the fault does not lie with advocates but with our culture.’ He explains that psychological explanations for IACCs create real risks for patients, such as losing disability insurance and even custody of their children. This marked a weird shift in tone, because until then, I’d felt he was arguing that the fault definitely lay with advocates. Still, it was his most pertinent point, and one that almost everyone who criticises patients’ opposition to psychological explanations misses or ignores. His piece would have been stronger if he’d worked this point into its body, rather than popping it in at the end.

Anti-psychiatry bias exists throughout society. When people think IACCs are psychological, they view them as something we could overcome if we really wanted to. People say to us, ‘Surely you can’t be that ill’, ‘Surely you can manage that on your own’, or simply, ‘Have you tried?’ This prejudice also exists within the medical profession. A doctor who thinks you’re making it up or exaggerating is not going to say that. They will probably default to diagnosing you with depression or anxiety. So it’s no surprise that people with IACCs have come to see these diagnoses not just as inaccurate, but dismissive and disbelieving.

I find it strange that those who accuse the IACC community of anti-psychiatry bias never mention this. They are only concerned with the bias they perceive within our community, and not that which exists outside of it, even though this harms people with IACCs every day.

Finally, I cautiously agree with Levonvitz on some counts. I’m not entirely against brain retraining or nervous system-based approaches to aid with recovery for IACCs. They’re unproven, often expensive, routinely oversold, and can lead to patient-blaming. But they seem to help some. Those who benefit should be able to share their experiences without being attacked (although patients have legitimate concerns about this, as brilliantly explained in Naomi Whittingham’s The Trouble with Recovery Stories). Psychological illnesses are as real as any other, and labelling a condition psychological does not automatically equate to dismissal. We should drop the term ‘all in the mind’ altogether, as it stigmatises people with mental health conditions.

In some ways, Levinovitz’s article is better than past pieces which promote brain retraining and/or criticise the advocacy community. Admittedly, the bar was low because past pieces have been so biased and unprobing. But I thought it was worth highlighting its redeeming features nonetheless.

In my next post, I’ll explore some flaws in the piece.

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I’ve been taking a break from publishing on here as I travel through South America. I’m now in the final leg of my trip, watching the World Cup in Mexico City, and I’ll be posting again when I’m home. Hopefully, football won’t be far behind me. (Football fans and English people will know what I mean!)

Before then, I’ve got something to share that I hope will be helpful. We are approaching one year since the UK government published its Final Delivery Plan for ME. UK patients and advocates will know how disappointing it has been so far. But we must keep up the momentum, so I have written a letter template, shared below, that UK advocates can use to write to their MPs. It outlines the plan’s failure and asks MPs to get involved.

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Dear [Name of MP],

I am writing to express my dismay at the UK government’s delivery plan for ME/CFS and the inaction since its publication. Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, is a complex chronic condition. People with ME experience a range of debilitating symptoms, including extreme fatigue and cognitive dysfunction, after minor physical, mental, or emotional exertion. Flare-ups can last days, weeks, or months, and severely affected patients are housebound or bedbound. Some studies suggest that almost half of Long COVID patients meet diagnostic criteria for ME.

The publication of the Final Delivery Plan (FDP) was intended to take a year, but instead took three. When the government eventually published it in July 2025, it fell far short of the patient community’s expectations, with very few actionable commitments. One year on, it has failed to improve care or professional understanding, and there remains no ringfenced research funding.

The plan included a pledge to ‘explore whether a specialised service should be prescribed’ for people with very severe ME/CFS. They lie bedbound in pitch-black, silent rooms 24/7, and some require hospitalisation and tube-feeding. However, there remains no NHS care pathway, putting them at risk of further deterioration and even death. In March, nine months after the publication of the FDP, the government announced that it had postponed discussions on this specialised service until at least April 2027. This demonstrates a disregard for patients currently in desperate need.

[Include your own experience]

The delivery plan was a golden opportunity to reverse decades of mistreatment, neglect and dismissal. But so far, the government has continued to ignore the needs of people with ME. However, it can still change course. I urge you to join a growing number of MPs in becoming a parliamentary champion for our community, starting by pressing the government to implement the plan’s recommendations without further delay.

I look forward to hearing from you.

Yours sincerely,

[Your Name]

That’s all for now!

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Thankfully, I didn’t have much to worry about.

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Friends sent voice notes on WhatsApp that I could listen to when I was able, talking about everything we’d do when I was better, like go for walks. I hadn’t gotten out of bed in over a year, so I was a long way from that. However, it provided an unmistakable, albeit distant, ray of light that kept me going.

When I began to improve, they visited. Imagine the thrill of having a proper conversation for the first time in a year. Each time, the knock on my bedroom door shook up my stomach with excitement like a snow globe. I felt like a kid on Christmas morning again, except my list was not full of wished-for presents, but discussion topics I’d mentally rehearsed, and rather than unwrapping gifts, I was giddy to know what gossip they had for me.

Over the next six months, I probably had more than ten friends visit. I realise how lucky this makes me. One, in particular, came often. He’d regularly text my parents asking if he could come by. I wasn’t always well enough, and when my parents said no (on my instruction), he’d persist:

“How about five minutes?”

“Not today, I’m afraid.”

“OK, how about tomorrow?”

Whenever he entered my room, he’d say my name in the same warm, cheerful way, immediately soothing the sores of my isolation. I felt the part of me that had been screaming for social interaction relax, like a child being given a lolly after throwing a tantrum.

I’d been deprived of stimulation for so long that the most mundane account of his trip to Aldi sounded like a Hollywood blockbuster. Questions sprang up in my mind like whack-a-mole. As I still couldn’t really speak, I furiously scribbled them down for him: Which Aldi - Stockport Road or New Bridge Lane? What did you buy? Aubergines, really?! How long was the queue? Twelve people, no way! What was the person at the till like?

18 months after I became bedbound, a couple of dozen of my friends completed the Three Peaks Challenge (climb Scafell Pike, Snowdon, and Ben Nevis in 24 hours) to raise money for the Open Medicine Foundation. They finished with 17 minutes to spare and raised a whopping £5,400. They had to run down one mountain through snow in the dark, and some say their legs never fully recovered. People shouldn’t have to do this to raise money for ME research, but I feel immensely lucky to have friends who were willing to (even if they haven’t let me hear the end of it since).

Since I improved, we’ve been doing all the things they said in their voice notes, and more. They often ask how I’m doing and, usually after a few beers, tell me how happy they are to see me up and about, which means a lot. When I started going out again, I expected to hear jokes about that terrible time from those with a particularly dark sense of humour. But for a while, it wasn’t forthcoming. I think the whole thing was so awful that they weren’t sure it would be OK.

“Are we allowed to joke about it, yet?” one friend recently asked.

“I’m surprised you haven’t already,” I replied.

Since then, there have been jokes. And I much prefer it that way.

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The authors promote ‘bespoke programmes designed to increase activity’ and ‘tailored approaches’. Since the 2021 NICE guidelines for ME/CFS recommended against ‘fixed, incremental increases in physical activity’ as a treatment, many patients have been offered physical rehabilitation framed as ‘bespoke’ or ‘tailored’. Similarly, NHS ME clinics have offered activity-building programmes named ‘activity management’, ‘pace-up’, or simply ‘pacing’.

‘Bespoke’ and ‘tailored’ are ambiguous terms. Technically, a clinician could advise a moderate patient to go running, and a severe patient to go for a ten minute walk, and claim it was tailored advice, because it was dependent on severity. But both of those recommendations are probably far more than they can manage, and could cause a serious crash. I’m sure many who administered the most aggressive forms of graded exercise therapy (GET), which led to drastic, long-term loss of function in some patients, would claim their approach was tailored.

The authors do not state whether, under a bespoke or tailored programme, a patient should be told to maintain or increase their activities through post-exertional malaise (PEM) or crashes - in other words, to push through their symptoms. This is concerning, as it seems to be a common thread between those who reported the most severe deterioration from GET. As someone who went from mild to very/extremely severe in under two years, partly by repeatedly pushing myself past my limits of my own volition, I know the risks well (thankfully, I am no longer that ill).

Proponents of bespoke or tailored programmes often say that the patient is allowed to build up at their own pace, and encouraged rather than pressured. However, in practice these distinctions can quickly blur. ME breeds disbelief and can frustrate healthcare professionals. In severe cases, rehabilitation often happens in private spaces, like bedrooms, without any oversight. Many report being accused of not trying hard enough, or not wanting to get better, when it isn’t working. Given tailored or bespoke programmes still expect a patient to continually build their activities, this is still possible, and I know of some who have experienced it.

The authors write that patients need ‘expert multi-disciplinary care’ and ‘specialist rehabilitation’. This is easy to say. Currently, there are extremely few ME specialists and experts in the NHS, such that many severe patients are currently receiving no specialist care and waiting years for a diagnosis. The NHS ME clinics are patchy and woefully underresourced. And again, ‘expert’ and ‘specialist’ are subjective terms. Do the authors consider the staff within those clinics to be experts and specialists? I know of patients who report encountering the issues I’ve outlined under their care.

The authors focus on severe patients, who are very vulnerable, often too ill to advocate for themselves, and for whom further loss of function could be disastrous. Therefore, I find it very concerning that they do not even acknowledge the potential risks of rehabilitation, never mind suggest how to prevent them.

Finally, the authors present the Leeds unit as a model for expert care, but forget to mention the cost. When I was referred several years ago (and, nine months later, turned down), it was £3,500 per patient, per week. It’s also worth mentioning that there are eight beds at the unit, and over 400,000 estimated ME patients in the UK, with a quarter severely affected at some point in their condition. Yet they do not mention how they propose to upscale this very expensive model to treat all these patients.

In summary, the authors’ suggestions around physical rehabilitation are not detailed enough to be practicable. Nor do they signify a break with programmes that have historically harmed people with ME - I’d recommend reading the response from Tom Parsons to the article. Brushing over important questions around safety with vague, unqualified terms is unhelpful.

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A disclaimer

Collapsing ‘mind-body dualism’, which argues that mind and body are fundamentally separate entities, is a worthy cause. The mind is the brain is the body. Mental illness is as real and serious as any - I don’t like the term ‘all in the mind’, because it suggests otherwise. Psychological factors play a role in most conditions. I’m open to nervous system work and have, like many others, tried therapy, breathing exercises, mindfulness, yoga, brain retraining, and more in an effort to recover.

Grasping for a diagnosis

Mental health diagnoses aren’t inherently dismissive, but in practice, they can be. Stress can be linked to most physical symptoms, almost everyone experiences it, and as a diagnosis it’s unfalsifiable (impossible to disprove). So, for very complex, poorly understood conditions like ME, it’s a convenient way for doctors to deal with patients who don’t fit into a neat diagnostic box, effectively taping over the gaps in their knowledge. Doctors generally struggle to admit when they don’t know, and this means they avoid having to. Stress is also easy and cheap to treat through lifestyle advice, relaxation techniques, and therapy.

With very severe ME patients, it’s not so easy. They are so shockingly debilitated that clinicians can’t simply diagnose them with stress and send them away with lifestyle advice. But with standard tests still coming back normal, no knowledge or training to refer to, and no NHS care pathway for very severe ME, they’re lost. A psychiatric explanation remains their only recourse, so they ramp up efforts to find one, delving deep into medical records and ordering psychiatric assessments. The fundraising page for Savannah Victora-May, who remains in a dangerous condition in an NHS hospital with very severe ME, reads that she has had ‘repeated visits by a psychiatrist interrogating her about her childhood’.

In these circumstances, mental health diagnoses become especially problematic. For one, they are fraught with confirmation bias. Rather than exploring the possibility of psychological factors, it often seems that clinicians have already decided it’s psychiatric and are looking for anything to confirm it. The explanations remain unfalsifiable, but in very severe cases, they become more tenuous. If they look hard enough at your record, or ask enough questions about your state of mind, childhood, relationships, and whatever else, they’ll probably find something stress-related they can tie your condition to. If one assessment doesn’t, it can be repeated, sometimes with different assessors, until it does.

The reality on the ground

In my case, they discovered I’d had therapy several times, and that was enough. The emergency mental health assessment that followed concluded I was not mentally ill. But soon after, another followed which concluded I was. Later, different clinicians would haphazardly throw out depression, fear of activity, social anxiety, autism, and catatonia as explanations for my condition.

I recently spoke to the father of a woman in her early twenties who’s been completely bedbound in a dark, silent room for almost two years. He said clinicians had concluded that the trauma of her mother’s death almost ten years ago, and the stress of having to take responsibility for her younger siblings, had triggered her illness. He was understandably hurt by this, as it seemed they were suggesting he hadn’t been a good father during that time.

Merryn Crofts died from malnutrition due to complications from very severe ME in 2017 aged just 21. In a 2024 interview, her mother and sister stated that clinicians had believed Merryn’s condition was psychiatric. One reason was that a mental health assessment had found that she was not mentally ill (2.25) - apparently, no-one that ill could not have any mental health issues. So it seems the conclusion was foregone, whatever the assessment had found. Another reason was that she was an adult who liked Disney (4.25).

Mismanagement following diagnosis

Once clinicians have diagnosed the issue as psychiatric, it can lead to mismanagement, dismissal, and potential harm. They are more likely to recommend exercise/activity regimes without factoring in post-exertional malaise (PEM) or crashes, as this is, I imagine, how you would typically treat the problem if it were anxiety or depression. This puts the patient at risk of further deterioration.

Moreover, when the patient is unable to continually build their activities, this is often seen as a choice - that they’re not trying and don’t want to get better. Someone that ill with anxiety or depression probably would be able to do more if they pushed themselves. And if they did, they probably wouldn’t ‘crash’ and be able to do even less for days or weeks afterwards, like someone with ME. Essentially, it doesn’t fit with the clinician’s expectations, and this can create frustration and hostility. They may get angry with them for not responding as they expect and pressure them into doing more than they can manage.

After telling me ‘the problem is the anxiety’, one clinician encouraged me to go downstairs and have dinner with my family. At the time, I was completely bedbound in a dark, silent room 24/7, largely unable to speak and struggling to feed myself. And I’d ended up there, in part, by repeatedly pushing myself past my limits. If I’d followed his advice, I expect the consequences would have been disastrous. But as the clinician thought the problem was anxiety, it probably seemed it couldn’t do any serious harm. He later wrote that I seemed ‘unwilling to engage with any suggestions…to make progress’.

Viewing very severe ME as anxiety or depression, healthcare professionals also won’t understand the need for eye masks, ear defenders, commodes, zimmer frames, or wheelchairs. They won’t understand why the patient can’t speak or wash themselves, or needs interactions to be kept to the bare minimum. The result is the same - they often conclude the patient is being dramatic, not trying, or doesn’t want to get better. And the patient is too ill to defend themselves. For what it’s worth, I don’t know of anyone with ME who hasn’t desperately wanted their old life back. And it’s bizarre to think anyone at the extreme end, chained to their bed in a state of near-total sensory deprivation 24/7, would choose it.

I could list dozens of examples of disbelief and pressure I experienced during that time. The mental health worker who said peevishly, ‘You will have to come out of this room eventually, you know?’; the NHS ME nurse who asked, ‘You’re not speaking to me today, then?’, as if I just didn’t fancy it that day; the nurse who shouted, ‘TALK! TALK! YOU TALK, I TALK BACK!’ when I had to use hand gestures; nurses who said, ‘You don’t want to try? You’re supposed to engage with the service’ and ‘You’re letting yourself down’ when I couldn’t get to the bathroom. And many have it much worse than I did.

Final thoughts

As you can see, current efforts to manage very severe ME patients within a psychiatric framework create many problems. All the issues I’ve covered are things I hear much too often, and it’s not good enough. I am vehemently pro-psychiatry, providing it’s done with a degree of precision, open-mindedness, and respect for the patient. That’s often not the case here.

So what needs to happen? Ultimately, there’s one thing I want to hear more from clinicians dealing with ME: ‘I don’t know.’ Because they don’t. After decades of neglect and almost no formal training, I don’t blame them. But if we want to make real progress in understanding and treating infection-associated conditions, we need them to move from unconscious to conscious incompetence. Trying instead to stuff us into pre-existing, ill-fitting boxes prevents this, doesn’t work, and can cause harm.

I’d also like to see accelerated progress towards a specialised service for very severe ME, staffed by healthcare professionals who understand how to manage the condition, as laid out in the UK Government’s Final Delivery Plan for ME/CFS.

In 2026, this isn’t too much to ask.

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The morning after my horrendous crash1, I received a text. I shouldn’t have been using my phone, but everything had happened so suddenly, it was uncharted territory, and everyone was panicking. I peered at the dimly-lit screen under the bedcovers through one eye slit. What felt like a jolt of electricity immediately shot through me. My whole body strained, as if begging me to stop. The same happened whenever I tried to speak, even in a whisper.

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The text was from my dad. It said the GP was going to call me. Given my speaking difficulties, this was worrying. I couldn’t afford to crash again the morning after the biggest one I’d ever had. It would reduce my chances of recovering and risk losing the tiny bit of function I still had. But it felt like I didn’t have much choice. I knew that refusing would worry my parents more and increase the chances of a hospital admission, which can make people with severe ME worse. I was also worried it would lead to dismissal and disbelief. Many with ME are wrongly labelled ‘difficult’ or ‘unwilling to engage’ for refusing ill-advised recommendations that would lead to crashes.

Almost no-one within the NHS knows, or believes, that ME can leave you struggling or unable to speak. I struggled with this a lot over the next 18 months. Many health professionals visited, often unannounced, expecting me to converse, and sometimes do physical exercises. I would try to answer and do as much as I could in an effort to please. This meant I frequently overdid it, and multiple times this led to a reduction in function lasting many months.

When the doctor called, I explained my situation in a hoarse whisper, using as few words as possible.

‘Do you think you need to be in hospital?’ he asked in disbelief.

I assume he was looking at his notes and seeing I had ‘fatigue’. It’s a word commonly used to describe ME, including by myself. The problem is, fatigue is a very common, mundane symptom, which is inconsistent with the high level of debility seen in many ME patients, leading to confusion and disbelief. In reality, it doesn’t feel anything like fatigue in the way an ordinary person understands it. But it’s probably the closest word there is, so we’re stuck with it for now.

I replied that hospital would make me worse.

‘Being in hospital will make you worse?’ He was incredulous, perhaps contemptuous. But it was true. The trip there, along with the light, sound, stress, and repeated interactions when I arrived, would have led to a major crash. Many hospitalised with ME report mismanagement, mistreatment, and dismissive attitudes among doctors. In some cases, this can lead to life-threatening complications, as with Savannah, who has gone weeks without food after a medication enabling her to tolerate food was withdrawn.

‘Will I have to come out and see you?’ he eventually asked in a tone of frustrated resignation.

He visited around lunchtime.

‘How long do these episodes usually last?’ he asked, kneeling by my bed. I explained that they used to last days, but now they were all lasting weeks.

He then asked if I’d be better off in a residential facility. He said that if there was a fire, I’d struggle to escape, especially as my bedroom was in the loft. I panicked and said no. The risks were similar to a hospital stay, and this sounded long-term. The last thing I wanted right then was to be somewhere unfamiliar surrounded by strangers, none of whom would understand ME.

Eventually, I really had to stop talking. ‘Doctor, can I just rest?’ I croaked.

‘Yeah, sure,’ he replied breezily. He left saying he’d return that evening to take blood samples, as he’d forgotten the equipment.

I was utterly spent. At that severity, it can take days or weeks to recover from a visit or phone call, never mind both. To prepare for the next visit, I rested as aggressively as I could. I didn’t move a single muscle from lunchtime until evening. Thankfully, it was brief; he took my bloods and left again.

At my request, my dad later called the GP and told them I wished to see a different doctor in future. Soon after, another one came to visit.

‘After reading your medical record, I think the problem here is mental, not physical,’ she said.

I assume she was referring to the fact I’d been in therapy several times. She was not the first health professional to conclude this, nor the last. Depression, anxiety, autism, catatonia, and simply ‘stress’ were all suggested at different times.

‘It’s ME,’ I protested.

‘Do you know much about ME?’

‘Yes.’

‘What do you know'?’

I could barely say a few words, so answering a question like that was impossible. I’m surprised she couldn’t see this for herself. ‘Quite a lot,’ was all I managed.

She sniggered. ‘Well, I don’t think this is ME.’

She told me she was referring me for an emergency mental health assessment. When I protested again, she said that if I didn’t consent, I could be sectioned under the Mental Health Act, so I reluctantly agreed. Afterwards, she told my dad that she thought sectioning was the last thing I needed. She was right.

Doctors are often lost at sea in these situations, lacking the knowledge, training, and resources to provide adequate care. The problems I encountered - being expected to converse more than I could, tenuous psychiatric diagnoses, and the possibility of a potentially damaging removal from home - are not rare for very severe ME patients. I’d like to write a separate post on each in the future.

Ultimately, I was in a big crash, which usually improve on their own with a few weeks of rest. What risks long-term decline is continuing to overdo it within a crash. I don’t doubt the doctors were doing what they thought was best for me. But the last thing I needed, at least in those first days and weeks, was an inundation of phone calls and visits filled with questions, and stressful talk of moving me away from my family.

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It was my desire for a cheese sandwich that led to the crash1 which left me bedbound in a pitch-black, silent room for 18 months in 2022.

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I’d been ill for two years and housebound nine months by then, so I was no newbie to ME. But shortly before the big crash, after overdoing it one day, my condition had become very unstable. Until then, my crashes had usually lasted a day or two. But suddenly, they all started lasting weeks, no matter how small the overexertion that triggered them.

My energy envelope2 also started playing tricks on me. I’d think I could do something, try it, feel OK for a minute, then suddenly realise I was going to crash unless I stopped immediately. Before this, it had been much easier to predict what I could manage. Now, crashes were creeping up on me without warning, and by the time I clocked them, it was often too late.

I don’t know what caused this strange shift in my condition, but it made it much harder to manage. With all my crashes lasting weeks, it was hard not to crash again before they had subsided. This is how many with ME deteriorate long-term, and it was how it happened with me.

I was resting in bed one lunchtime, having crashed four days earlier. Normally, it would have resolved by then, but these longer crashes were my new normal. I was hungry, but my parents were at work, and my bedroom was in the loft. This meant I’d have to traverse two flights of stairs to get the cheese sandwich I knew was in the kitchen fridge.

Could I manage it? Given how unpredictable my PEM3 had become, I wasn’t sure. I decided I probably could, just about. And the hunger was already worsening my PEM, so I didn’t think I could wait until dinnertime. I decided to try it.

As you might have guessed, this turned out to be a huge mistake. But it was so easily done. The reality of severe ME is that one mistake - overestimating your energy limits, failing to say no to someone, or even eating the wrong foods - can have serious consequences.

I slid down the stairs on my bottom and crawled into the kitchen. I hoped this would save some energy. It probably sounds silly to anyone without ME, but if you’re severely affected, small things like this can help you manage tasks that would otherwise be undoable.

I got the cheese sandwich from the fridge and ate it sitting on the floor.

As I did, I realised I’d gravely misjudged my energy limits. I felt the PEM suffusing my body like poison. I crawled to the living room and lay on the sofa for an hour, eyes closed. But the symptoms refused to abate.

Given how severe I already was at that time, I knew this crash would probably leave me fully bedbound for weeks. I’d never experienced that before and began to panic. It didn’t seem feasible to spend it on the sofa in the living room. I’d need somewhere quiet and dark to ride it out, and this was the main room in the house, where my parents watched TV every evening. I couldn’t expect them not to use it for weeks. To stay quiet whenever they were downstairs. How would I even explain it to them? I didn’t have a diagnosis, so it was all very confusing for them already.

I impulsively decided to crawl back upstairs to bed, stopping halfway to lie down for a bit in the bathroom. When I was a few feet away from my bed, I stood up, stumbled and collapsed onto it.

The effect on my symptoms was like someone turning up the volume on a speaker from uncomfortable to ear-splitting. I struggled to move. Light and sound became intolerable. I remember thinking something like, ‘God, I’ve really messed up here.’

I don’t think I moved a single muscle until that evening when my dad brought up my dinner. When he tried to hand it to me, I could only stretch out my arm limply and lower it to the floor.

‘Oh,’ he said with concern and went downstairs.

He returned with my mum a few minutes later. I couldn’t really speak, so trying to explain what was happening, or respond to their questions, was incredibly difficult. I can’t imagine how terrifying it must have been for them. For many months, I’d only been able to get between my bed and the sofa, but they had no idea it could get this bad, or what to do now that it had.

With the few words I could muster, I begged them not to go to the doctor. To instead give it a week, then see how I was. I tried to explain that no-one from the NHS would understand and could very well make it worse. It’s incredible, but very severe ME patients have valid reason to think this, as my experience over the following 18 months would show.

‘They must be able to do something,’ my mum said, exasperated.

She was about to find out the hard way that that isn’t necessarily true.

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The A Series of Unfortunate Events books ignited my passion for reading as a kid. They’re exceptionally well-written, and I spent countless hours engrossed in them. Reading fiction at that age can be magical, when your imagination is free and your sense of wonder so easily aroused.

There are 13 books in the series. They follow three extremely unlucky orphaned siblings - Violet, Klaus, and Sunny Baudelaire - and a man claiming to be a distant relative, named Count Olaf. In each book, the Count infiltrates their lives under a different guise and attempts to steal their family fortune. After thwarting him, they move and start over, only for him to appear again.

In some ways, it’s a fitting analogy of ME. An illness you’ve never heard of invades your body and snatches years of your life, taking with it hopes, plans, experiences and friendships. And if you’re unlucky, it returns just as they’re getting back on their feet, through a relapse or viral reinfection, brandishing new symptoms and ready to steal more years from you.

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I studied English Literature at university. Although many of the course texts weren’t for me, there were some that deepened my love for books. They included: Great Expectations (Charles Dickens); Frankenstein (Mary Shelley); and Paradise Lost (John Milton), although I confess I was too lazy to read all 12 books of PL because I was, well, a student.

Now, I have a window each day where I can manage focused cognitive activities. I want to use it in the most productive way, so I can’t justify reading for fun very much. Even in my ‘on’ window, it still sometimes feels like driving a car with the handbrake on, especially if I’ve not been pacing myself well. Writing takes longer, and I’m sure I’m less creative. At a certain point in the day, my thinking becomes so sluggish I have to stop and rest. Research shows that cognitive performance, including reading speed, memory, and attention, is impaired in people with ME.12

It’s not just about productivity. Reading a novel isn’t as fun as before I became ill. It used to light up my mind with images and ideas. But now, in the evening when I want to read, those lights are dimmed and flickering. My limited cognitive energy is spent, and if I try to read a book, it feels like nothing’s going in. I might read a page and be unable to recall a thing from it.

If we met, however, you might think there’s nothing wrong with me. One reason for this is that, if my symptoms are flaring up and I’m struggling to follow a conversation, I can just nod and pretend, which I often do. But I also don’t struggle much with autopilot activities, like small talk, because they don’t involve much thinking. When something requires me to deeply concentrate, as reading and writing do, that’s when my brain can feel like a plodding tortoise.

To wake up one day and find parts of yourself that you held dear suddenly and inexplicably impaired is difficult to accept. Even five years on, I struggle with this. Reading and writing have long formed part of my identity, and being a writer who doesn’t read much invites impostor syndrome. Like many with ME and similar conditions, I grieve my lost years, experiences, opportunities, and potential, but it’s grown easier with time.

The silver lining of not reading for fun is that I’ve rediscovered my love for the cinema. I go so much that I’m considering becoming a member at my local one. Films and TV are less cognitively taxing, so they’ve become my main forms of escapism. However, for me the joy of being immersed in a good book is irreplaceable, its calming effect unmatched.

My cognitive symptoms are significantly better than when they appeared five years ago. Writing this blog would have been impossible then. And I believe they’re continuing to improve, inch by inch. I cannot wait to while away an entire afternoon reading a novel again one day. War and Peace by Leo Tolstoy is top of my to-read list. I was too daunted by its 1,200 pages to tackle it before ME, but now I relish the thought of it.

Since my physical fatigue has improved immensely, I’ve been able to do many things I couldn’t before, like socialising, hiking and playing football. And in every case, I’ve had a newfound appreciation for them. So I know that when I can regularly read for fun again, the same will happen. And knowing how much I loved it before ME, I can’t imagine how good it will feel.

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Sleep dysfunction receives less attention than the other primary symptoms of the condition, post-exertional malaise (PEM) and cognitive dysfunction. But it’s a required symptom in numerous diagnostic criteria for ME, including the Canadian Consensus (2003) and National Academy of Medicine (2015).

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My own sleep issues began two years after my other symptoms. It happened when my condition dramatically deteriorated and I became bedbound in a dark, silent room. The unrefreshed feeling I awoke with was separate from the constant PEM I was also experiencing. Anyone who’s had a dreadful night’s sleep will know what the tiredness feels like, whereas the PEM was like being poisoned and impossible to adequately explain. It’s a shame, then, that some still frame PEM as an excess of ordinary tiredness when ME patients often experience both simultaneously and know they are fundamentally different.

Eventually, my PEM improved substantially. With my newfound energy, I looked online for possible treatments for my sleep issues. The algorithms soon latched onto this, and an advert for a ‘free webinar’ promising the answer to my problem soon appeared on my Facebook feed. I was naturally suspicious but decided to sign up anyway - at worst, I’d waste half an hour.

It was by a company trying to sell a course of Cognitive Behavioural Therapy for Insomnia, or CBT-I. They said it was the most effective treatment for sleep dysfunction, and after Googling it myself, I discovered this was indeed true.

CBT-I aims to increase your ‘sleep efficiency’ - the percentage of time you're actually asleep while in bed, calculated by dividing total sleep time by total time in bed. This increases the mental association between bed and sleep, which is disrupted in many with insomnia. It does this by helping to change your thoughts and behaviours around sleep. This includes:

• only using your bed for sleeping (not watching TV, as I did)

• not going to bed until you’re so tired you’re struggling to keep your eyes open

• getting up if you don’t fall asleep within 20 minutes

• getting up at the same time every morning

• avoiding napping during the day, as this reduces your ‘sleep drive’ for the night

I didn’t have the £200 for the course (and was put off by their unethical ‘limited time discount!’ sales tactic), but I found a free alternative created by the US Department of Veterans Affairs and decided to try it.

It did say things might worsen to start with, but I couldn’t have known by how much. The problem was, I could never fall asleep within 20 minutes, which meant getting up over and over again until it was almost time for my alarm. Around 5AM, I’d abandon the rule and stay in bed just so I could get an hour or two’s sleep.

If the nights were tough, the days were brutal. After a week of almost no sleep, I couldn’t concentrate on anything and my motivation was non-existent. I desperately resisted the urge to nap or doze, as the course recommended, but it was torturous at times. Nonetheless, I reminded myself it was expected to begin with, and I needed to persevere.

Things still hadn’t improved after several weeks, however. I no longer felt safe driving as I feared falling asleep at the wheel. I also felt guilty at having gotten almost nothing done in that time due to the exhaustion. So I gave up on the course.

That was several months ago. I still use some things I learned through CBT-I, like only using my bed for sleep, waiting until I’m very tired to go to bed, and getting up at the same time (almost) every day. But I take a much softer approach. Unless I’m wide awake, I don’t generally get up if I can’t sleep, and if I really need to lie in or take a nap, I do.

Whatever I try has to be manageable and sustainable, and some parts of CBT-I weren’t for me. Unrefreshing sleep is part of having ME, and I’ve realised I’ll have to accept it for now whilst doing what I can to manage it within reason. Unlike PEM, tiredness from poor sleep is something you can generally push through, providing it isn’t dangerous or detrimental to your wellbeing, and that’s what I do mostly.

For many with sleep dysfunction, thoughts and behaviours play a major role. But for those with ME, there are other factors at play, like autonomic nervous system dysfunction, which is probably why CBT-I didn’t work for me. What’s more, some elements, like avoiding naps, conflict with those used to manage ME, like pacing and rest.

If you have sleep dusfunction due to ME, I’d recommend trying whatever feels doable for you. Prioritise your safety, wellbeing and symptom management over sticking rigidly to any protocol, and if doing it under supervision, make sure they understand the condition.

Have you tried CBT-I for your ME, and what was your experience? Has anything else helped with your sleep dysfunction? If so, I’d love to hear about it, so please share in the comments!

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Developing ME can be scary and bewildering. You may feel alone in navigating the complex symptoms and even more complex state support systems. There are things I wish I’d done differently in the beginning, and I’ll share five things I learned from this, so you can avoid the same mistakes.

Don’t despair

The first thing you might do when you notice your symptoms is Google them. You naturally want to find out what’s wrong and what your options are. But this can sometimes leave you feeling worse. I remember reading that only 5% recover from ME and being terrified. I was prone to catastrophising at the time and thought my life was over. Safe to say, this did not help my mental health or recovery.

I’ve been talking a lot more about my ME in the past year. Through that, I’ve encountered many who have improved substantially and returned to some kind of normal with limitations, including a number who consider themselves recovered. This happened within a few years in most cases, but I’ve met some who’ve gotten their lives back after being very ill for many more (fifteen, in two cases!). Of course, some remain moderately or severely affected for many years through no fault of their own. But it is possible to improve, regardless of how long you’ve been ill. So especially if you’re new to ME, don’t think your life is over.

Learn pacing

I couldn’t write this without mentioning pacing. As many will know, there has long been fierce contention about whether people with ME can benefit from building up their activities. But regardless of where you stand on that, you will need to learn to pace yourself first to create a solid foundation for managing your symptoms. Otherwise, you risk falling into boom-and-bust cycles (overdo it, crash, return to baseline, repeat) that will certainly not help your recovery and may even worsen your condition. Pacing requires practice and self-discipline, but once you’ve mastered it, you’ll feel much more in control.

From here, you can download a detailed guide on pacing from the ME Association.

Be assertive

This one is huge. My trajectory could have been different if I’d been more assertive early on. This can be difficult with ME, because many view fatigue as something you can push through if you’re willing to. They don’t understand that the fatigue you get with ME is different from ordinary tiredness, leading to disbelief and suspicion. Nonetheless, you have to set clear boundaries if you want to manage your symptoms.

It can be especially difficult to be assertive at work, whether saying you need to go home because of a flare-up, asking for reasonable adjustments or taking time off. You might feel like you’re leaving your colleagues in the lurch, or worry they’ll see you as work-shy or a malingerer. In these situations, remind yourself that it’s actually better for your employer, as well as yourself, if you stop now and return when able, than if you push through and have to take much longer off because of a huge crash.

Luckily, assertiveness is learnable skill, and there are loads of free resources online with practical advice. Here are a few:

• Improving Assertiveness Self-Help Resources (Government of Western Australia Department of Health)

• Being Assertive (The King’s Trust)

• Assertiveness (Warwick University)

Don’t gaslight yourself

Alongside setting clear boundaries with others, you’ll need to be honest with yourself. If you pride yourself on being tough, or were highly motivated and productive before ME, it can be painful to admit that you are ill and need to slow down. When my symptoms started, I hated that I’d been unable to do any work for a week, never mind months. I kept trying to return to normal activities before I was ready, and it always backfired. Accepting you need to slow down earlier may pay dividends later by creating space for your body to heal.

Don’t put off applying for benefits

When you’re already struggling to adjust to your symptoms and navigate the healthcare system, just thinking about applying for disability benefits can be exhausting. It can be a lengthy process, and you may not feel you have enough energy for it. When I became housebound, I avoided it for many months and missed out on a lot of benefits I was entitled to. I’ve spoken to numerous others who’ve done the same. But you have every right to apply, and there are accommodations that can be made if, for example, you cannot speak for very long or at all. Call Citizens Advice to find out your options, and if you can, get a loved one to help with your application. And remember: you are not doing anything wrong by applying for benefits to which you are entitled.

You might feel lost and overwhelmed by ME at first, especially if your doctor wasn’t helpful. But with the right approach, you can learn to manage your symptoms and general wellbeing much better and increase your chances of recovery.

If you know someone who has recently developed ME and feel this may be helpful, please share it with them. And if you, or they, have any questions, feel free to message me through my Substack or on social media (my handles are on my profile).

I’d experienced something vaguely similar years before at university when I’d worked all day, and late into the night, to finish an essay that was due the following day. But to wake up feeling like this, with no obvious cause, made no sense. Initially, I expected it would pass in a few days. But every day for many months, I woke up mentally exhausted and unable to process information, and no amount of rest seemed to help. Even watching TV often made my brain physically ache.

Bizarrely, my internal monologue then suddenly disappeared. I remember trying to watch TV, and although I could see the picture and hear the words, my mind was completely blank. Thankfully, this passed after six weeks.

Occasionally, the fatigue would ease slightly, and I’d excitedly rush to catch up on some writing. But within an hour or two, I was always back to square one. Having a good day, overdoing it, then crashing as a result is a cycle that many with ME will recognise.

I was freelancing for a marketing agency at the time, and rather than explain my symptoms and ask for accommodations, I tried to push through (another mistake many with ME will relate to). Saying I had ‘mental fatigue’ felt inadequate. ‘We all get that,’ I imagined them saying. I would reach a point in the day where trying to bring up any thoughts at all, never mind be creative, was like trying to draw blood from a stone. Eventually, I parted ways with the agency.

When I first told my GP, she gave a drawling, ‘Yessss’ as if she’d already heard it several times that day. She asked how much caffeine I drank. I told her one cup of tea a day, and she sounded a little surprised. She advised me to manage stress and come back if it hadn’t cleared up in a month. This was reasonable advice, but if she had experienced my symptoms for one minute, she would’ve known that too much caffeine or general stress wasn’t the cause. However, explaining my symptoms, or convey their severity, in a way that did them justice was very challenging. The only language I had to describe it sounded pretty benign, or at least pointed to very common experiences: fatigue, brain fog, tension headache, etc. I went back several times, but like many with ME, I eventually had to accept they didn’t know what was wrong and stopped going.

Researching online, I found very few others describing the same symptoms as mine. Even within the ME and Long Covid communities, most talked of memory issues, losing their train of thought, and struggling to find words, not chronic cognitive fatigue. There were times I questioned whether I was imagining it. How was it possible to wake up one day with life-changing cognitive impairment that doctors couldn’t explain and no-one else seemed to have?

I eventually joined a support group on Discord for young people with Long Covid and ME. I explained my symptoms and was relieved to hear that a couple of others had them too. There may in fact be many others with this cognitive subtype. It’s so tricky to explain that many probably do so in different ways, while others, fearing disbelief or not being understood, don’t bother trying. These together were probably why I couldn’t seem to find any others at the beginning.

Alongside these symptoms, I also experienced the hallmark symptom of ME, post-exertional malaise (PEM), when I overexerted myself. This worsened over time until I became housebound and then bedbound. At that time, I was too unwell to do much at all, so my cognitive issues didn’t bother me. Luckily, my PEM has improved enormously since then, and although my cognitive symptoms remain after five years, they’re significantly better than they were.

Cognitive dysfunction in ME and Long Covid can take different forms. If you’re unfamiliar with it and still confused about what mine feels like, I don’t blame you. But hopefully you at least understand that it’s not the typical tiredness you get after working too hard or having too many coffees. And that trying to describe it is, in itself, a pain.

Although it’s been five years, I remain optimistic that I will continue to improve and one day return to normal. There might be a medical breakthrough, or (perhaps more likely) it could be a slow, incremental period of improvement that is usually how progress with ME happens.

I’m one of the lucky ones in many ways. Classic PEM doesn’t affect me much anymore, meaning I’m able to do things that most with ME cannot, like play sports and go hiking. However, I still struggle with cognitive dysfunction. I’ve been overdoing it lately, and as I write this, it feels like I’m thinking through treacle. Thoughts come slowly, and my mind often feels blank. When I stop trying to think, it suddenly feels like my head is trapped in a vice.

I’m continuing to overdo it by writing this, but I’ve decided it’s worth it for the satisfaction I’ll get from finishing it (though obviously pushing through symptoms with ME is not recommended). I hope to write a post exploring my cognitive symptoms in more detail soon. I also experience chronically unrefreshing sleep, which I’ll explore in another post.

Through this blog, I’ll be sharing my experiences and opinions. I’m keeping my scope broad, so posts might be about healthcare, research, advocacy, something that happened to me that week, or anything else that I think is worth writing about. I plan to write one post a week, and I’ll try to keep them around 800 words to make them accessible for pwME and help me manage my own symptoms.

I’m partly starting this blog to help myself. I love writing and have a lot to say about ME. Currently, I remain some way from full recovery. As many pwME will know, it can be hard to find purpose and meaning when you’re so limited in what you can do each day. So, I’m hoping this will help with that.

Another reason for the blog is that I believe we are at an important moment in the struggle for recognition. A lot has happened in the past five years. Long Covid has brought increased awareness of infection-associated chronic conditions. The long-awaited results of the DecodeME provided clear avenues for future research. Media coverage has both grown and been more sympathetic than in the past.

Just a few weeks ago on 19 November, 24 UK MPs spoke in a debate on ME in Westminster Hall, demonstrating the very significant (and growing) political support we have, especially among the Liberal Democrats. Obviously, we’ve been let down many times before, so any optimism has to be tempered with caution. But I do believe that we are edging closer to better care, more research, and proper recognition, and I would like to help move things forward in a small way if I can.

I’m very much looking forward to writing my first proper post next week!

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