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What we’re not being told about ME NICE won't admit its treatment of the chronic disease doesn't work

ME/CFS sufferers have felt abandoned for years

ME/CFS sufferers have felt abandoned for years


August 25, 2021   8 mins

There is surely no disease more cruelly misnamed than “chronic fatigue syndrome”. It is mysterious, apparently triggered by viral infection, and can last for months, decades, even a lifetime. Patients can be housebound or even bedbound for years. But the name makes it sound like they are just a little bit tired.

Apart from Covid, it is probably the most controversial disease in the world and, in fact, chronic fatigue, or ME/CFS to give it its proper name, does seem to share many features and symptoms with “long Covid”: fatigue, brain fog, pain on exertion, the assertion that the affliction is purely psychological. And for over three decades, patients have been told that the treatment for it is to get up and do some exercise, even though for many, exercise seemed to actively make their condition worse. They have been told, in near-explicit terms, that it’s their responsibility to get better.

Recently, it looked as though that was going to change. The NHS guidelines for treatment were going to be updated, and patient groups were happy. But then, at the last minute, that was delayed, and many patients are feeling betrayed and furious. One man I spoke to, John Peters, has been in its grip for 35 years.

For John, formerly “the fittest man in his rugby team”, the main symptoms were cognitive. He struggled to remember things, or recognise faces. He walked past his own sister in the street; he once enthusiastically shook the hand of a stranger, thinking he was his cousin. But there was also psychic pain: an “electric storm in my head”. He’d get up at 1pm and go to bed at 10pm but not sleep, just have hallucinatory fever-dream “white nights” and be in tears at 6am begging for sleep to come.

John’s case is typical of many. The disease onset is often linked to a viral infection: patients recover from that, but then something goes wrong. Some recover in a few months. Others never do. And no one knows what causes it.

Hence the excitement last week about the National Institute for Health and Care Excellence (NICE) new guidelines for treatment. And hence the rage when the publication was delayed.

All those many patients — between 130,000 and 260,000 at the last count — who have felt ignored and belittled, or that they were being blamed for their own failure to recover, thought that, at last, their concerns were being taken seriously. Now that it has been kicked into the long grass, they are furious.

To understand the rage, it’s useful to understand the trouble with the currently disputed NHS-approved method for treating ME/CFS: a combination of cognitive behavioural therapy, CBT, and “graded exercise therapy”, GET. The approach is based on a theoretical model of how the disease works called the “biopsychosocial model”.

The basic idea is, first: someone gets ill with some virus. A cold, the flu, whatever. While they have that virus, they become deconditioned. So when they next try to do their normal level of exercise, it hurts, and they feel exhausted. The patients attribute that to the disease, and stop doing exercise. So they become even more deconditioned, and so the next time they try exercise, it becomes even more painful and exhausting. It becomes a positive feedback loop – the pain prevents the exercise, and the lack of exercise increases the pain.

This model was first really applied to ME/CFS in a 1989 paper: it represents, according to the authors, “a transfer of responsibility from the doctor, in terms of his duty to diagnose, to the patient, confirming his or her duty to participate in the process of rehabilitation”. Understandably enough, patients took this to mean that getting better is their responsibility, and if they don’t it’s because they haven’t worked hard enough.

The associated treatment involves a steady (“graded”) increase in exercise, and “cognitive work to break the association between increase in symptoms and stopping or avoiding the activity”.

Again: to many patients, this very much sounded like being told that their condition was their own fault. Your beliefs that you are ill are in fact causing you to be ill. And it didn’t match with their experience of the disease, and specifically something called “post-exertional malaise” – that is, huge flare-ups of the condition caused by exercise.

But it doesn’t matter whether patients didn’t like this model. What matters is whether it is a useful one, and whether the CBT/GET treatment works.

When the 1989 paper was written, there was no evidence for the model; it was purely hypothetical. In 2011, though, that seemed to change. The PACE trial looked at CBT/GET treatment for ME/CFS. It gave about 600 patients either normal medical care, or normal medical care plus CBT/GET. Then it asked those patients to fill out forms reporting how fatigued they felt and how well they were able to function physically. People who had had CBT/GET reported greater improvement than the ones who had only had standard medical care.

But patients’ groups were unimpressed with the study, and so were some other researchers. Jonathan Edwards, a professor emeritus of connective tissue medicine at UCL who has been a critic of PACE since its publication, told me that the problem is that PACE is unblinded, and uses subjective outcomes.

In the best research, subjects are “blinded”: they don’t know whether they’re getting the real treatment or a placebo. It stops the trial being biased by patient expectations. But sometimes you can’t do that, so it’s important to use an objective outcome. For instance, if you’re measuring the impact of a drug on your blood potassium levels, then it might not matter if the trial isn’t blinded, because patients’ expectations probably won’t affect their blood potassium. But you need to do one or other, either blinding or objective measures (and ideally both).

The PACE trial, though, took a subjective outcome – patients’ self-reported physical activity and fatigue – and an unblinded population, and so was at risk of patients simply telling researchers what they obviously wanted to hear.

You absolutely can get quite large effects like this, says Edwards. He refers in his evidence to NICE to a study into a drug, rituximab, in treating ME/CFS. It found an apparently strong effect – but it, too, was unblinded and subjective. And a follow-up study, with rigorous blinding, found nothing. It didn’t work any better than placebo.

Over the last four years, NICE has been reassessing the evidence, partly as a result of patient pressure. They looked at the PACE trial and several other more recent ones into CBT/GET. For both elements – the CBT and the GET – the experts who looked at it concluded that the evidence “ranged from low to very low quality”, mainly for the reasons described above.

That assessment was made public as part of a set of draft guidelines published in December last year. The new guidelines said that clinicians should no longer offer ME/CFS patients “any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy” and to only offer CBT as support for managing their symptoms, not to offer it as a treatment for ME/CFS itself.

Then, the day before the final guidelines were to be published last week, came the announcement that they were to be delayed. Clinical bodies, including the Royal College of Paediatrics and Child Health (RCPCH) and the Royal College of Physicians (RCP), put out statements welcoming the pause.

But no one seems to want to say why. For instance, Trudie Chalder, one of the authors of the original 1989 paper, gave a quote welcoming the delay because the new guidelines were “confused”. But when I asked her about it, she said she couldn’t comment until the new guidelines were published, which was odd, since she already had. “I can’t be more specific at this time,” she said when I followed up. “I think it’s better to wait until we see the final guidelines.” NICE themselves wouldn’t talk to me except to point me to their statement.

The RCPCH didn’t want to say anything except that they hope “our evidence and other people’s will be made public in good time”.

The only hint of what has gone on seems to come from Dr Andrew Goddard of the RCP, who said “We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version.” It seems likely that NICE has delayed its publication because, basically, clinicians’ groups were angry that their preferred method of treatment has been dropped.

This isn’t how NICE is supposed to operate. NICE is supposed to take into account the clinicians’ submissions, of course, but not to be beholden to them. Chris Ponting, a professor of human genetics at Edinburgh University, told me that “The NICE panel was put together from all walks of life; highly respected individuals esteemed in their individual areas. They thought that all of the evidence [for CBT/GET] was of low or very low quality.”

“I’ve seen on social media that this is a political process because there is a veto given to certain groups,” Ponting added. “I really hope that these claims are wrong, and that these guidelines are published without any further delay. If NICE are bending to some professional lobby now, would they also bend to pharma companies?”

I am genuinely confused by this: NICE has, since its founding, been one of the best things about the British healthcare system. It has been scrupulous at establishing which treatments are cost-effective and which are not, often in the face of severe public and media pressure. So it’s really important to find out what’s happened here: the full publication of the guidelines, and of all the submitted evidence, would be a good starting point.

Researchers have defended the PACE trial by saying that it is difficult to do good blinding and use objective measures in things like ME/CFS. And the infectious disease physician Andrew Miller, in defence of the treatment, says that “without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007 [when the current guidelines were established].”

But the fact that it’s hard to get good evidence doesn’t make the evidence you have better. And the fact that there aren’t well-evidenced therapies doesn’t make the therapy you have better-evidenced. Science isn’t graded on a curve: “If results are unreliable, they cannot be considered reliable just because it is difficult to get more reliable ones,” as Edwards put it in his evidence to NICE (his emphasis).

Meanwhile, a fraught area of medicine gets even more toxic. When I last wrote about ME/CFS, in 2017, one researcher told me that “The last time I said anything public about CFS, I got followed around by an angry mob for about a year, on Twitter and email. Some even turned up to talks I gave, and I’ve heard of them turning up to people’s houses or doxxing them.” The author of a study in that piece said she had received death threats. Another researcher, who I know personally to be pretty fearless, told me when I tried to speak to them for this piece: “I’m afraid I don’t go within a million miles of ME/CFS these days. Just too much grief.” ME/CFS patients have a reputation for being angry.

Partly I think that’s caused by the sheer number of patients – approaching a quarter of a million in the UK alone. With that number of people, it only takes a tiny percentage to contaminate the whole debate. But it’s also because those people have felt ignored for so long.

Often the argument between sufferers and observers descends into a poisonous row over whether ME/CFS is “psychological” or “physical”. But patients like John are keen to stress that that shouldn’t be the area of contention. What’s important is that the CBT/GET paradigm doesn’t seem to work, at least beyond a placebo effect in a subset of patients. The evidence has been assessed and found wanting and the delay in publishing the guidelines just means that more patients will be put through it, against what appears to be the best scientific evidence.

So NICE must swiftly publish their new guidelines along with all the evidence from the patients’ groups and professional bodies attached. They should explain this delay, beyond the boilerplate statement, because as it stands it looks awfully like its decision-making process has subverted. And, they should trigger some more real research into the causes and nature of the disease. Perhaps the rise of long Covid will help encourage that. Otherwise more lives will be lived in a cruel twilight, like John’s, 35 years after diagnosis: “I’m 60 now. I have nothing, I have no one. I have no memories; my life is unlived.”


Tom Chivers is a science writer. His second book, How to Read Numbers, is out now.

TomChivers

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Rhys W
Rhys W
2 years ago

Lots of issues with this article.

As a doctor, I’m a bit perplexed as to why you take offence at the name CFD, as if it doesn’t reflect the toil of those suffering it. Disease names aren’t supposed to do that – what about motor neurone syndrome, or multiple sclerosis? It’s an accurate description for a hugely variable condition, which is probably post viral in some cases (not definitely all as you say) and due to a whole plethora of multi factorial issues in many. Fatigue in general is the hardest symptom to treat by a country mile.

Dishing out rituximab therapy for CFS as standard care is absolutely bonkers. I give this to my lymphoma patients and it’s incredibly suppressive to the immune system with not insignificant treatment related mortality. If you get unwell with COVID on it then chances are you die in what we are seeing.

If there is no treatment, no magic pill, then yes the responsibility has to go back to the patient in managing (not curing) the condition as best they can, with professional support. That’s common sense. What is the alternative? People expect modern McMedicine to have a pill for everything but sadly that’s very far from the case. The biopsychosocial model of disease relates to all disease not just CFS. If you have heart disease and can’t move around much like you used to then CBT could be the difference between you adapting as best you can and getting depressed on top. It’s about making medicine more human and not chucking drugs alone at everything. Yet you describe it as more impersonal therapy than an antibody infusion.

Last edited 2 years ago by Rhys W
Alka Hughes-Hallett
Alka Hughes-Hallett
2 years ago
Reply to  Rhys W

Thank you. Excellent points. Same goes for Covid and long Covid.

Hilary LW
Hilary LW
2 years ago

So-called “Long Covid” (ridiculous epithet) is in fact ME/CFS. Which is not to underestimate its disabling effects on the sufferers – quite the contrary. But because this post-viral syndrome happens to be linked to Covid it’s given almost hallowed status by the media – while exactly the same condition linked to other viruses has been downplayed and dismissed as largely psychological. There’s nothing unique or new about “long Covid”. It suits the hysterical narrative to present it that way. ME/CFS and Fibromyalgia (which seems closely related) are real physical syndromes that haven’t had the objective research necessary to understand them and to find effective treatments – though treatments may not always be cures. It seems reasonable to suppose that there may be an auto-immune response involved, and auto-immune conditions are always challenging to treat.

I first developed ME at the age of twelve, after a particularly savage encounter with mumps. No-one knew about the condition back in the 60s, and I was dismissed as “lazy” or mentally unstable when I complained of agonising muscle pain and blinding headaches after any physical exertion. Over the years I learnt to manage this, but it certainly limited my life. And then in 1992 I was extremely ill with a “mystery virus” (according to my doctor) that seriously exacerbated the fatigue and pain, insomnia, brain fog, the lot. It was then that ME was diagnosed, but I was expected to find my own way to deal with it. Acupuncture helped me to some extent, together with a complete lifestyle change. But I’m sad to say that in my case, it’s never gone away. I sometimes wonder what my life might have been like with normal levels of fitness.

scrott
scrott
2 years ago
Reply to  Rhys W

I agree in so much that CFS is an accurate description of the disease. It does reflect the suffereing, the issue most take is that most people can’t understand it from the name, fatigue whether chronic or not is to most people oh I’m tired after a day or work or after a run or jog.

Also, I vehemently disagree with your statement that the responsibility has to go back to the patient. The responsibility is for doctors and specialists to keep testing until they find the underlying cause. CFS/ME isn’t a disease it’s a bunch of people group by symptoms there will never be a “cure”. There is an underlying cause for the symptoms and it’s on the medial system to work out what it is. Is that not what you are there for?
I am living proof of this. I have suffered with ME/CFS for 25 years since the age of 7 and was going through a lot of tests to work out what was wrong then one day through the door was a leaflet saying you have ME/CFS. I accidentally stumbled onto the keto diet as a way to lose weight without exercising and it just so happened to be what has returned me to a “normal” energy level. Look like I have a severe issue with carbs, intolerance, metabolising them, I don’t know and probably never will. If someone would have kept on testing and found out my body reacts badly to carbohydrate (which to be honest having a type 1 diabetic mother should have been high on the list) I might have had 15+ years of my life back.

Alex Stonor
Alex Stonor
2 years ago
Reply to  scrott

Getting an illness can be an incredibly learning experience that may involve changing your diet& general lifestyle in a radical way in order to overcome the pain (physical &/or emotional) that you are suffering. In my experience it can result in a better health & vitality & a certain amount of resistance to other illnesses or conditions. Ideally there would be time, flexibility & openness to new ideas, for each sufferer to be treated with the right blend of medication, therapy and lifestyle changes so that they can live a life.

Rhys W
Rhys W
2 years ago
Reply to  scrott

You’ve perfectly described what I meant by taking responsibility as the patient. The doctors ran lots of tests to no avail. There is no test to ‘react badly to carbohydrate’ in the way you describe, presuming you are not coeliac. You used you own sense to work your body out. Every body and mind is different, and sometimes we can use the law of averages to come up with treatments that are likely to benefit enough individuals to become statistically significantly significant; but that’s not the case with many conditions. There is no one size
fits all approach for CFS in particular. It’s probably the biggest heterogenous group of disorders lumped into one category out there.

Please don’t read too much into fatigue as a measure of severity. It can mean tired from a bad night’s sleep to dying of tiredness, in the same way the term pain can describe a minor ache or the worst sensation imaginable. Many people also
misunderstand the terms acute and chronic as relating to severity when all they refer to is length of time – short and long term respectively

M War
M War
2 years ago

What you don’t know.
What’s missing from this article is that there is more than enough biomedical evidence of biological abnormalities in several fields of ME/CFS biomedical research that show that ME/CFS patients have objectively measured abnormal response to exercise that the healthy population do not. Even if PACE had not been discredited and did not have 100 Scientists calling for its retraction, this evidence would be enough to show that ME/CFS patients are harmed by exertion.
There are 9,000 biomedical papers detailing the biological abnormalities in ME/CFS patients vs healthy controls. You can always tell who has not read them.
The cardinal symptom of ME/CFS is post exertional malaise. It has other names as well, but basically if the patient exercises or exerts themselves they will feel very sick, and get flu like symptoms such as painful or swollen lymphnodes, sore throat, fever, et cetera. All detailed in the ME-ICC and ME/CFS-CCC criteria’s. That’s like a basic fundamental that if the person you’re talking to doesn’t know this it means they are not qualified to speak. https://me-pedia.org/wiki/International_Consensus_Criteria
This evidence for biological abnormalities in ME/CFS goes as far back as 1989 when cardiac and immunological abnormalities were found, but whose replication remained unfunded until 2018-2019 due to political interference in the funding of this disease.
Thanks to the brilliant scientists at Open Medicine Foundation ME/CFS research is taking leaps forward. We are so glad that someone who worked on the Human Genome Project is trying to save us, and that he brought his friends. https://www.omf.ngo/the-end-mecfs-project/
There have been as of 2021, 5 Symposiums on the Molecular Basis of ME/CFS. 4 at Stanford, 1 at Harvard. There have also been Biomedical Conferences at Emerge Australia, Invest in ME, IACFSME, and others. It is likely you will be reading a lot of commentary from people who have never read or interacted with the material presented at those conferences.
There are more than 10 potential biomarkers for ME/CFS with some in the front running to be diagnostic tests. We are just waiting for funding to make that happen. https://me-pedia.org/wiki/Diagnostic_biomarker
The proponents of GET/CBT are not physiotherapists, cardiopulmonologists, immunologists, virologists, microbiologists like the Scientists who are taken seriously by ME/CFS patients. They are not qualified to make statements about exercise.
As an ME/CFS patient, the only things I want is for my disease to receive the biomedical funding it deserves since I have a disease burden that is double HIV without treatment (https://pubmed.ncbi.nlm.nih.gov/32568148/), and for my medical care to be as evidenced driven and patient centred as anyone else’s.
The question is, why have ME/CFS patients been demonized for asking for the same treatment as all other patients? Why have GET/CBT proponents continually asked to have special treatment and gotten it in order to escape scrutiny and consequences for their shoddy research? (putting it mildly).
Here is just the surface of what you don’t know about ME/CFS.
1) ME/CFS patients have decreased V02 max on 2 day CPET.
Validity of 2-Day Cardiopulmonary Exercise Testing in Male Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
written by C. (Linda) M. C. van Campen, Peter C. Rowe, Frans C. Visser,
published by Advances in Physical EducationVol.10 No.1, 2020
“The gold standard for measuring the severity of physical activity intolerance is cardiopulmonary exercise testing (CPET). Multiple studies have shown that peak oxygen consumption is reduced in the majority of ME/CFS patients.
“All patients experienced a deterioration of performance on CPET2 as measured by the predicted and actual VO2 and workload at peak exercise and ventilatory threshold.”
2) ME/CFS patients have pre-load failure with invasive CPET.
DOI:https://doi.org/10.1016/j.chest.2021.01.082
“These results identify two types of peripheral neurovascular dysregulation that are biologically plausible contributors to ME/CFS exertional intolerance—depressed Qc from impaired venous return, and impaired peripheral oxygen extraction. In patients with small-fiber pathology, neuropathic dysregulation causing microvascular dilation may limit exertion by shunting oxygenated blood from capillary beds and reducing cardiac return.”
3) Abnormal production of blood lactate during exercise and at rest.
Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome
Katarina Lien BjĂžrn Johansen Marit B. VeierĂžd Annicke S. Haslestad Siv K. BĂžhn Morten N. Melsom Kristin R. Kardel Per O. Iversen
Ghali, A., Lacout, C., Ghali, M. et al. Elevated blood lactate in resting conditions correlate with post-exertional malaise severity in patients with Myalgic encephalomyelitis/Chronic fatigue syndrome. Sci Rep 9, 18817 (2019). https://doi.org/10.1038/s41598-019-55473-4
4) ME/CFS patients have chronotropic intolerance on 2 Day CPET
Davenport, Todd E et al. “Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?.” Frontiers in pediatrics vol. 7 82. 22 Mar. 2019, doi:10.3389/fped.2019.00082
I’m a Severe ME/CFS patient. My only scientific literacy is from a class I took in Research and Methods, Stats for psychology, and neurobiology for psychology.
You need to be familiar with these authors and these papers to be able to understand the evidence of the abnormal response to exercise, activity, and exertion that ME/CFS patients have.
Thank you for your time.

Last edited 2 years ago by M War
scrott
scrott
2 years ago
Reply to  M War

That’s all fascinating to see there is so much out there that is being ignored by the wider Medical Community. In my personal experience I don’t think there is any singular cause or cure for the symptoms it’s on a case by case basis and the medical community needs to do the run all tests on the sufferers until they find what the issue is. We are just grouped by our symptoms, not the cause. In my case just last year I found that reducing carbohydrate to less than 5 grams a meal has let me return to a “normal” life/energy level. I can now run with no ill effects other than a stitch and tiredness, not exhaustion and after some time as little as half an hour I can be recovered and back to doing anything I please. 25 years it’s taken for me to find this breakthrough and not a single doctor or dietician suggested or tested for this. I am still infuriated and saddened for all the people who may or more likely wont ever find what is causing the symptoms for them.

Jon Redman
Jon Redman
2 years ago
Reply to  M War

ME/CFS patients have a reputation for being angry.

Sue Julians
Sue Julians
2 years ago

Good piece.
I understand better now the anger emanating from this group of patients. Not only does GET/CBT not seems to work, it also seems to be extremely damaging. Yet it has been forced upon people with catastrophic results. What happened to first do no harm?
We see this happening with a sub group of long covid patients too, and treatment offered at some LC clinics unfortunately seems to be based on the CBT/GET model. With predictable outcomes. This hasn’t been helped by oped pieces like ‘I exercised my way out of long covid) which perpetuates the hypothesis underlying the fear/ de conditioning theory.
Activism has been damaging imo. The overstating of numbers, using self reported uncontrolled surveys has included an extraordinary number of symptoms. Some of these could be long pandemic, or normal symptoms seen in the population. It’s only a small subgroup that reports PEM/PESE. (There is another serious subgroup with lung symptoms, but this is better understood as PICS and dissimilar to Me/CFS). So when these people recover from their long covid, it reinforces the notion that progressive exercise is the answer.
my experience of long covid was that I couldn’t exercise for 6-7 months without crashing the next day. I rested instead (knowing the risk of post viral syndromes) and at that point something changed. My body had either cleared the virus or it’s response to it. I didn’t feel exhausted and could start running again.
the concept of rest as medicine, rather than exercise, is a difficult one for people to grasp. Particularly healthcare professionals, and particularly MSK physiotherapists. The arrogance of some doctors in their proclamations that ‘nothing bad ever happens from taking exercise’ has been very damaging, and has reinforced the perception that this is all in the heads of those suffering.
im sure you’ll have comments on the BPS model. Well, there is bio in that, the PS just makes it worse or conversely can improve it. Nocebo or placebo. For way too long this badly understood disease has been assumed to be entirely PS.
my only remaining caution is on the attempt to find a definitive test. The rush to this, may encourage a cascade of intervention that changes the results of the test, but not the symptoms. We see this a lot in other conditions, where the same findings are asymptomatic but not absent. (Eg MRI for disc prolapses, or OA) i hope this isn’t he outcome, since it seems clear that this is about the way your body responds to something, not the thing itself.

scrott
scrott
2 years ago
Reply to  Sue Julians

I like that you are trying to understand the issue that cfs/me sufferers are facing but rest as medicine for decades is not an ok answer, also the government isn’t willing to foot the bill for these people to have a good quality of life like those who by luck of the draw of their genetics can function in the society we have created. To the detriment of ending up soo ill, I would be in hospital for weeks every year or 2 I had to go out to work so I didn’t end up on the streets and so if rest was the answer I could no longer. I have lost 25 years of my life to these symptoms and no one did anything to help other than go. Why don’t we all sit in a group and talk about it, how is that helpful? It’s not there is a physiological reason why my body stopped producing energy. It’s not on me to find out why, it’s literally the medical professionals job to find out why you are sick but instead they have an easy way out lumping you in with a bunch of other people who have the same symptoms different underlying reason and washing there hands of you. The biggest misunderstanding of the medical community is that this isn’t a condition where everyone suffers the same symptoms and the same mysterious underlying reason. All the people I know who have recovered have used different methods and none worked for me.
I found it out for myself by accident, when going in the keto diet to help me to lose weight without exercising as I couldn’t for 25 years, but it turns out I have a severely low tolerance to carbohydrate 5 grams is enough to return me to my ME/CFS symptoms for days.

Last edited 2 years ago by scrott
Sue Julians
Sue Julians
2 years ago
Reply to  scrott

This is exactly the point of my last paragraph. Different stimulants trigger migraines. Chocolate, red wine, stress etc. For those sufferers it is about identifying those in order to avoid the result. It’s a sensitivity issue, there is not one response or one answer. Thus the desire for a test may send medicine down the wrong alley to try and gain a cure. There is no such thing as cure, there is always a footprint, a memory. You can never ‘not have had’ a disease.
It may turn out to be like many other diseases with a genetic predisposition and an environmental trigger. Dysautonomia, lack of homeostasis, vagus nerve balance, whatever the mechanism.

scrott
scrott
2 years ago
Reply to  Sue Julians

Now I’m not sure whether to edit my response or leave the trail for others to see?

Sue Julians
Sue Julians
2 years ago
Reply to  scrott

I’m happy either way! Leave it for context i guess.

Deborah B
Deborah B
2 years ago
Reply to  scrott

Really interesting that keto dieting has worked for you. I’m sure there are many more beneficial effects to be discovered about diet relating to illness. On top of what is already known. Two huge areas of interest, keto to reverse Type 2 diabetes and the role of gut bacteria in the health of the immune system.
But what I really wanted to say is how important it is for everyone to have that bravery to seek their own answers, not rely on the medical profession or governments to do this for us.
The medical profession and big pharma look down on so many treatments that are helpful. So don’t expect any support for a treatment that doesn’t fit with their narrow established view of what can work. Evidence based medicine promotes only treatments that can meet the criteria designed to be used for drugs. I’m simplifying, of course. But it’s not possible to measure so many drug alternatives without resorting to patient’s own subjective assessment of symptoms.
Innovation in treatments is crushed. Drugs rule. Money wins. There is no profit in a cure.
On another topic, as a psoriasis sufferer for 50 years, I successfully manage my skin by diet. I didn’t experiment but read the book by Dr Pagano which recommends cutting out the nightshade family of foods, notably spuds and tomatoes. I eat these foods and my skin flares. Only took me 45 years to find this out but my health has improved immeasurably. It grieves me that psoriasis treatments now focus on the biologics, with terrible potential consequences in the future. But great profits for pharmaceutical companies.
The Pagano diet’s potential for cure/management has to be shared on social media so sufferers can find out for themselves. A dermatologist won’t tell you. There’s no money to be made out of it. No budget for research. Just the minimal cost of a book you can buy on Amazon.

John Riordan
John Riordan
2 years ago

“But the fact that it’s hard to get good evidence doesn’t make the evidence you have better. And the fact that there aren’t well-evidenced therapies doesn’t make the therapy you have better-evidenced. Science isn’t graded on a curve: “If results are unreliable, they cannot be considered reliable just because it is difficult to get more reliable ones,””

We could really do with having this principle enforced more rigorously in the fields of climate and Covid politics, quite frankly.

Laura Creighton
Laura Creighton
2 years ago

For instance, if you’re measuring the impact of a drug on your blood potassium levels, then it might not matter if the trial isn’t blinded, because patients’ expectations probably won’t affect their blood potassium.

This is a misunderstanding of how the placebo effect works. This misunderstanding is pretty wide-spread, especially in the medical profession.

There are patients who do not produce enough of a hormone made in the human thyroid. Nobody, as far as we know, has ever been able to secrete thyroid hormones on demand, or indeed be aware of the secretion happening.

You collect a study group of these patients. You give half of them a thyroid hormone producing medicine. You give the rest a placebo. The ones who get the medicine produce more hormone. The ones who get the placebo do not. This is what you expect as a researcher, so you are happy. But you are not done yet. You start giving 2/3rds of the people who were taking the real medicine the placebo instead. You tell half of them that they are getting the placebo. You keep that secret from the other half.

And, in defiance of what we would wish to be the truth, you find significant numbers of both placebo receiving groups, who have been in some sense ‘trained’ by their prior exposure to the medicine will continue to produce the thyroid hormone. If you do this study in the USA you will find that more of them will continue to do so than if you do the study in India or in the Netherlands.

This isn’t what is expected. If the placebo effect is being caused by a patient’s _mind_ — which has always been the claim — it does not seem to be the _conscious_ mind that is involved. We may need a new concept as to what a ‘mind’ is, which is a bit much to expect medical researchers to come up with. And the last time we let the psychologists have a crack at it, we ended up with an unverifiable mess with a whole lot of ‘proof by I am a smart individual and this seems correct to me’, enough that the Freudian concept of ‘the unconscious’ seems pretty well discredited at the present time.

So the ‘how do placebos work, anyway?’ problem is hard.

As a practical matter, about ME — Since there is no one ‘ME-virus’, it is believed that you get ME because your own immune system misbehaves in trying to get rid of whichever of a large range of possible viruses you became infected with. One current hypothesis held by a significant number of researchers, which is considered speculative, (especially since we still don’t know what antibodies are good for, and if they actually do something or are just a marker for something else going on) is that certain people produce a superabundance of antibodies, and they eventually target the wrong things with this catastrophic result. If this turns out to be the way the disease works, then the giving people recurring covid boosters to keep their immune systems producing a high level of antibodies could be an extremely bad idea.
I have no idea if this hypothesis made it into the report, but if it did, that might be a reason to delay publication.

Last edited 2 years ago by Laura Creighton
Andrew Daws
Andrew Daws
2 years ago

as someone pointed out recently, if we aim to vaccinate everyone against Covid, it means that we have no control group, so the clinical trial will fail by definition.

Laura Pritchard
Laura Pritchard
2 years ago

This article is extremely interesting and the informed replies are even more so. When Long Covid started to be mentioned, it came to me one day that maybe I’d had Long Virus Syndrome (my name) for many years without realising it particularly with regards to energy cycles of boom and bust. On the other hand I have done a lot of work identifying my own personal emotional structure in recent years and this has made an enormous difference to my overall physical well being. The final part of the picture for me is my particular genetic profile which falls in the hypermobile range making it highly likely that physical activity will backfire in some way.
My point here is not to lay out my medical history for support and succour but to illustrate my point of view which is that this sort of condition is extraordinarily complex, responds to multiple intersecting systems – immune, hormone, genetic, dietary, psychological etc and incredibly difficult for the medical profession to offer up clear guidelines. So it doesn’t surprise me that there are delays in doing so. However the debate in this thread shows that the subject is urgent and significant. Whilst I do believe the patient can do a huge amount to improve their own condition, if nothing else by continuing to ask questions, there is nothing worse than how you are feeling being dismissed as something irrelevant or even worse something you are just too lazy to fix. The psychological and consequently physical poison of this narrative is, in itself, a terrible disease inflicted upon those already suffering.
There has been an ongoing debate about the culture of shaming and blaming around the Sars Cov2 Pandemic. I think that the psychological effects of this sort of fear based messaging makes the likelihood of Long Virus Syndrome all the more likely. It is YOUR fault you got sick. It is YOUR fault you can’t get well again. All of these narratives around health and behaviour are toxic and counterproductive. I don’t think the problem lies with the protocol of CBT/GET as described. If it works for one person, it’s a worthwhile therapy. But so is any other such as the keto diet described by scrott. Similarly if someone makes it clear that a particular therapy isn’t working or is actually making things worse that should not be ignored or dismissed. The issue is recognising that if someone expresses a problem, particularly to a medical professional, it is a problem. For people that like to solve problems, it is in fact quite a juicy one to get their teeth into.
I hope the dialogue continues to be vigorous and the funding is found to explore more potentially effective therapies. I was lucky. I had a local surgery that was happy for me to keep exploring what was wrong with me and propose treatments. In the end I found my own answers but that support was utterly invaluable in validating my concerns and making real something that in other circles was labelled as a manifestation of my own inadequacies. I think it’s fair to say that’s a misery we can all afford not to experience.

Last edited 2 years ago by Laura Pritchard
Alex Stonor
Alex Stonor
2 years ago

I wonder if post-viral fatigue, ME/CFS and long covid are the same.

Hilary LW
Hilary LW
2 years ago
Reply to  Alex Stonor

Of course they are.

scrott
scrott
2 years ago

Hello, I’m not a medical professional but a sufferer who has through years of perseverance managed to have a somewhat reasonable life. In the last 2 years, I have been having an excellent life thanks to finding the keto diet and that my symptoms were caused by having a severe reaction to low amounts of carbohydrates. I don’t think this is the answer for everyone but is worth trying if you are currently at a dead end.
My personal story starts at the age of 7 when a happy child stopped being able to go out and play with their friends and spent at least 1 – 2 days a week off school with what seemed like the flu. My GP’s never did a thing to help, it wasn’t until my brother was diagnosed with Coeliac disease. It wasn’t until the kind doctors at the hospital reached out to a doctor who worked there one day a week but was biased at a bigger hospital in the nearest city that I had some hope. He put me through so many tests and none of them amounted to much, this was over the span of 4 years but I was hopeful if they kept at it maybe one day I would be able to return to the world as a functional member. One day I received a leaflet no appointment no letter just a leaflet through the door explaining what CFS/ME was and that I had it. My mother being confused reached out to our doctor and they said yes I have been diagnosed with the disease but that was all the information we were given.
It wasn’t until many years later that I was told by my mother that the hospital I was under was unwilling to pay for me to go for further tests at the hospital the doctor who was working on my case was based at. That is why I was labelled and discarded due to money, not because there was no reason for my symptoms but money. This is why I believe the worst thing that ever happened to sufferers of this condition is for it to be labelled as instead of following the path of diagnostics, we get grouped into a dead end and left to rot with our symptoms no more help.

Last edited 2 years ago by scrott
Ailsa Roddie
Ailsa Roddie
2 years ago

I think it might also help if we stopped treating psychiatric disorders as though they were “all in the mind”. I’m only repeating the obvious but we’ve ended up with a concept of mind and body separation that is not an accurate reflection of reality. It’s just that the truth is mostly too complex for us to understand so we fall back on this. Even the bio-psycho-social model, which people seem to think is an effective unifying theory, is seriously lacking in explanatory power and acts to reinforce this notion of separation. I suspect that’s why we are struggling for effective treatments across a whole range of diseases.

I really hope they come up with better CFS treatments soon.

Andrew Daws
Andrew Daws
2 years ago

There is also the question of liability. There seems to be a body of opinion that putting mercury into our mouths could be part of the problem, so it’s interesting that in the US, if as a dentist you advertise that you practise mercury-free dentistry, you are liable to be struck of the register of the American Dental Association. That makes sense if you think that if I could prove categorically that my ME/CFS was caused by the mercury, just imagine what the law suits would look like. My ME/CFS has, at a conservative estimate, cost well over 100k in lost earnings. Who can I sue? Much safer for the medical establishment to blame me.

tygrus
tygrus
2 years ago

It would be interesting to investigate recent claims of harassment & threats.
Claims of death threats during a tribunal could not be substantiated & the judge labelled evidence as “grossly exaggerated”.
Judgement said,
“It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder.” pg.40 (iv)
https://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF

A survey response may indicate benefit but the patient may not have any real change. Same steps per day, same time off work/school, no significant increase to 6MWT, the ‘piece of paper’ is then worth nothing. Some BPS studies low quality with 1 or more problems: Survivor bias not accounted for, lowered bar of ‘recovery’, therapist bias, not all harm recorded, hiding null hypothesis results, lack of control group, lack of objective measures, overstating denominators & effectiveness in abstracts, and other problems making results unreliable.
Reanalysis of PACE trial data using original plan showed the recovery results much worse than first claimed.
virology.ws
me-pedia.org (eg. PACE trial)
and many other sources.

Andrew Daws
Andrew Daws
2 years ago

They have been told, in near-explicit terms, that it’s their responsibility to get better.”
No, that’s not the issue. I am quite happy to take responsibility. My GP (who has now retired) said quite openly that he didn’t understand it, even though I gave him plenty to read including a full diagnosis from a specialist, and all he could recommend was a referral to a neurologist. Well I saw a private neurologist some time ago, and he set me back considerably. He said it was Chronic Hyperventliation Syndrome. It isn’t.
I’ve had it for 50 years, and tried 66 different approaches, including 10K on getting the amalgam removed from my teeth, and weekly acupuncture sessions for 3 years.
Funnily enough there is some basis for CBT/GET in broad principle: if you are pushing yourself too hard, it may be that you need to look at why, and if you plough ahead with exercise without pacing, and without stopping to see if you can manage it, you will fail. But the clear implication of the standard treatment is that it’s all your fault, so you should just get off the sofa. By being very gentle with myself, I have been fortunate enough to make some progress (though the vaccine undid all that and put me back to square one for several months).
It’s not an illness that responds to a pill, and no pharma company will get rich by providing one. So the government has to pay for the research. Thank goodness the prevalence of Long Covid, disastrous as that is for its sufferers, is giving a glimmer of hope to those of us with ME/CFS.

tygrus
tygrus
2 years ago

It would be interesting to investigate recent claims of harassment & threats.
Claims of death threats during a tribunal could not be substantiated & the judge labelled evidence as “grossly exaggerated”.
Judgement said,
“It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder.” pg.40 (iv)
https://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF

Edward De Beukelaer
Edward De Beukelaer
2 years ago

A quote from Sackett in BMJ VOLUMEB312 13VjA,uARY1996 to start with:
Evidence based medicine is not “cookbook” medicine because it requires a bottom up approach that integrates the best external evidence with individual clinical expertise and patients’ choice, it cannot result in slavish, cookbook approaches to individual patient care. External clinical evidence can inform, but can never replace, individual clinical expertise, and it is this expertise that decides whether the external evidence applies to the individual patient at all and, if so, how it should be integrated into a clinical decision. Similarly, any external guideline must be integrated with individual clinical expertise in deciding whether and how it matches the patient’s clinical state, predicament, and preferences, and thus whether it should be applied. Clinicians who fear top down cookbooks will find the advocates of evidence based medicine joining them at the barricades.
Our illusion that some authority will explain why an illness is present in a patient and how we need to treat each patient we put in the box of the diagnostic pattern determined by that authority is a real issue in medicine.
As if we can classify patients in groups…. : they are all individual hence medicine needs to develop strategies for individualised medicine.
Classification of patients in groups and the way NICE work mainly benefits a kind of medicine that suit the medical organisation (from hospitals to accountants) : it rarely serves patients.
We can write one million of articles and discuss these subjects endlessly but until individualisation becomes a way of working and planning with 100% involvement of the patient’s opinion we shall remain stuck in these endless discussions what on average is the right thing to do: no patient is ‘an average’.
And, yes, individualisation is very difficult to work with and is a huge challenge but there exists already tools out there…. but they do not work well with the current way of thinking in medicine… but who is more important: the patient or the way of thinking of the medical machine???

Lizzie Scott
Lizzie Scott
2 years ago

Tom and others
Please look at CPnhelp.org. It worked for me. I’m still recovering but it stopped the worsening.
The video is good and explains a lot.

Last edited 2 years ago by Lizzie Scott
Michael Julien
Michael Julien
2 years ago

I had ME in 1992 and it took me four years to recover with the aid of this book:
Chronic Fatigue Syndrome and the Yeast Connection Paperback – 20 Nov. 1992 by William G. Crook
Discusses the role that the body’s production of yeast plays in disorders of the immune, endocrine, and nervous systems and details how nutrition and exercise have helped many patients suffering from the symptoms of Chronic Fatigue Syndrome.
https://www.amazon.co.uk/Chronic-Fatigue-Syndrome-Yeast-Connection/dp/0933478208/ref=sr_1_7/
I also had a course of intravenous injections of vitamins at a company in London called Biolab:
Here is the link to their website: http://www.biolab.co.uk/

Fennie Strange
Fennie Strange
2 years ago
Reply to  Michael Julien

I’m glad you have recovered Michael. However, I had ME for eight years in the 80’s/90’s and I learned to be very very cautious about following other people’s success stories.
During those eight years I read many books and many articles. I tried many diets, supplements and medical interventions: I cut out yeast; I cut out sugar; I followed the Stone Age diet; I had mud baths; I took anti-depressants; I had plasma-infusions and I took dozens of combinations of vitamins and minerals. Nothing helped for more than a few weeks, the disappointment and the self-blame were cruel and I wasted a lot of money I could not afford.
I recovered, up to a point. Enough to allow me to resume work and lead a more-or-less normal life. And I ascribe my recovery to something specific. I’m not going to say what it was. I don’t want to be the cause of another sufferer’s disappointment.

Hilary LW
Hilary LW
2 years ago
Reply to  Fennie Strange

Thank you for your thoughtful comment Fennie. I’ve had a similar experience with seeking remedies, though in my case although I’m far better than I was I’m still affected and still have relapses from time to time, despite my best efforts. Of course stress of any kind – psychological or physical – definitely makes things worse. But that’s true for any chronic health condition.

Deborah B
Deborah B
2 years ago

On the “placebo effect” mentioned in some comments. It might be a measurable demonstration of exactly how effective the self healing power of the mind is.
Bruce Lipton’s The Biology of Belief explains it well.

Beth Alderman
Beth Alderman
2 years ago

Certainly the doctor herd deserves a Darwin Award nomination for failing to recognize neurotoxicity and gastrotoxicity when they walk in the clinic door. The competition may be tough; our species has failed to recognize that anthropogenic habitat injuries that affect pollinators and other species affects us too. The good news about ME? It is a state of chronic exposure to poisons that can be detected by patients and “cured” through self-help. For more, search on chronic ambient poisoning and find an actionable diagnostic problem and a plethora of solutions for more than ME.

tracy clements
tracy clements
2 years ago

I have been pondering all of this for years. I was diagnosed first with glandular fever in school and then ME and now Fibromyalgia. All linked? But even then, not the whole picture. When I was diagnosed with Complex Post Traumatic Stress Disorder and PTSD I joined groups and discovered a high percentage of people with similar co-morbidities. Even more interestingly, I am now clinically diagnosed as have Autism Spectrum Disorder. Within the support or research groups for this nearly everyone has some or all of the previously mentioned conditions. I am a mere English teacher and ‘homemaker’ so have no idea what is going on but something is. I think many, like me, might miss important other diagnosis for years if they stop at the first one they get. Just a thought.