The use of the labels ME, CFS, ME/CFS

[EzzieD]

I would like to say ME but because of the stigma now attached to what was once a respectable name

I think it is interesting to re-read this five -year long thread.

As far as I am aware ME was only ever a 'respectable name' for the acute contagious illness with apparent focal neurological signs seen at the Royal Free and thought perhaps also to have occurred in Iceland and California. The medical profession, as far as I know, has never officially seen 'ME' as the name for what we call ME/CFS - a long term disabling condition with PEM.

A few physicians, especially in the UK, starting using 'ME' to describe people with ME/CFS but I am fairly sure that most of them thought they were diagnosing the original Royal Free illness, which as far as we know they were not. I think some GPs may have joined in using 'ME' but probably without knowing quite why. Patients thought they were getting a bona fide diagnosis but the vast majority of doctors had no clear idea what was being referred to.

It would be interesting to know on what basis the WHO decided to include ME as a diagnosis and call it a neurological disease, maybe around 1970. I think it highly likely that they were following the original idea of a specific contagious illness with apparent focal neurological signs.

ME has never appeared much in textbooks. The first attempt to define ME/CFS may have been Fukuda 1994, which called it CFS. Then CCC in 2003 made it ME/CFS. ICC tried to make it just ME but clearly because some of the 'experts' still thought they were dealing with some for of neuroinflammatory disease, as at the RFH.

There is also a view that ME is really a disease of energy metabolism, but I don't think it has ever been defined as such and we don't have much evidence support for that.

I agree with Peter that spending a lot of time on the name seems pointless. On the other hand, the considerable media coverage at the moment and the calls for action to Streeting and so on demonstrate just to what extent the different ideas of what ME means confuse any useful advocacy.

When I got and stayed severely ill for 5 years after a severe respiratory virus in February 1983, things were very different, indeed out of all recognition, from now. It was called ME among doctors who knew about the phenomenon of staying ill after a virus with the set of symptoms I had, which did include inflamed-feeling brain & spine, and marked muscle myalgia after physical exertion (plus gastro dysbiosis and cardiac hiccups). A few doctors told me they understood the situation, saying 'These things often start with a virus' and that 'it usually goes away within 2 to 5 years'. So some doctors did know about this back then.

The only definition at that time was the Ramsay one, which described my symptom set well. His one reference to fatigue was about quick and easy muscle fatiguability after exertion, not constant generalised fatigue. 'Fatigue' was never my main symptom. I don't recognise myself in the current definitions of 6 months unexplained fatigue plus optionally a few vague symptoms. (Am glad that at least PEM was recently added but it looks like doctors think that simply means increased 'fatigue'.)

Then along came the 'Yuppie Flu' churnalism in the press a couple of years after I got ill which I can only guess was some coordinated agenda to make ME look trivial, followed by the psychiatrists putting themselves forward as experts on a condition they knew nothing about, psychosomaticising it with the goal of making it look even more trivial. Thankfully at around that time (1988), I got cured of ME by off-label use of pharmaceutical drugs. This was not by some alternative private quack or similar, but my own NHS GP who wanted to help me. Yes, GPs could do that back then, there were no NICE Guidelines, doctors back then could think for themselves. It was a whole different world from now. My GP tried some drugs according to biomedical research on ME that was being reported in the news at the time, and miraculously it worked. I was able to go back to work, only part-time and had to rest a lot and pace myself social-life-wise, but fantastic after 5 years of severe illness. By 1990 I had made a full recovery and I didn't keep up with any further news about ME, I just wanted to forget it ever happened.

Then in 2005 I got struck down again, by a gastrointestinal virus, and ended up with severe ME worse than I'd had before. Feeling confident that a cure had been discovered by now, so that I could get back to my job ASAP, I did some googling and was horrified to find that not only had no progress been made, but it had all gone backwards big-time. ME was now called 'CFS', CBT & GET were the only 'treatments' for it, which I knew couldn't possibly help ME and were complete nonsense, and the definition of 'CFS' was now just 6 months of unexplained fatigue. What about the sensation of brain & spine inflammation, the muscle dysfunction, the cardiac arrhythmias, the extreme gut infection/dysbiosis symptoms, and more? Nope, just 'fatigue'. So now people who are fatigued but don't have the other symptoms of classic ME, got added to a vague new invented diagnosis, CFS, along with those who do have the classic ME symptoms, and it's all a shambles. No wonder nobody can find a biomarker, with such a mixed group.

In any case, that's a bit of first-hand history of how things were 40 years ago. There was plenty of research going on back then which soon got swept under the carpet by the psychs and their enablers. Now new bio researchers are finding all the same roads to go down thinking they've discovered something new, when it's the same as what researchers were finding in the 1980s before the psychs barged in. But let's hope it 'sticks' this time and doesn't get quietly dropped again.

The WHO classified ME as a neurological illness in 1969. The psychs tried to get that removed and have it reclassified as a mental illness, but thankfully the WHO didn't cave in to that.

 

[Jonathan Edwards]

It was called ME among doctors who knew about the phenomenon of staying ill after a virus with the set of symptoms I had, which did include inflamed-feeling brain & spine, and marked muscle myalgia after physical exertion (plus gastro dysbiosis and cardiac hiccups). A few doctors told me they understood the situation, saying 'These things often start with a virus' and that 'it usually goes away within 2 to 5 years'. So some doctors did know about this back then.

I can understand that it would seem like that if you were in contact with one of a small number of doctors who shifted the meaning early in this way. However, in the 1970s and early 1980s my mother was the virologist in charge of EBV at the Central Public Health Lab at Colindale which monitored EBV infections across the country. I was a junior doctor. We met weekly for dinner and I remember conversations about post-viral fatigue being common with EBV and the fact that she had diagnosed it in me ten years before. I also remember her referring to myalgic encephalomyelitis or 'Royal Free Disease' as a postulated new viral illness that she and her colleagues could never substantiate. Admittedly she saw it from the virological side but I was getting the same message from colleagues at UCH, Guy's and Bart's.

I am sure that some doctors did shift the meaning of ME to cover post-viral fatigue but if the WHO classified it as a neurological disease in 1969 I think it likely that they thought they were logging Royal Free Disease, since ME/CFS as we now know it, or if you like ME as we now know it, does not have any specific neurological features. Muscle aches and pains and swollen glands, headaches and inflamed feelings occur with flu and we don't call that a neurological disease.

I think it matters because people being told they have ME are still given the impression that they have some sort of neuroinflammatory disease and we don't have evidence for that. I worry similarly about patients being told they have problems with oxygen delivery when we have no evidence for that. It distracts everyone from the actual clinical problem and how best to cope with it.

 

[EzzieD]

I can understand that it would seem like that if you were in contact with one of a small number of doctors who shifted the meaning early in this way. However, in the 1970s and early 1980s my mother was the virologist in charge of EBV at the Central Public Health Lab at Colindale which monitored EBV infections across the country. I was a junior doctor. We met weekly for dinner and I remember conversations about post-viral fatigue being common with EBV and the fact that she had diagnosed it in me ten years before. I also remember her referring to myalgic encephalomyelitis or 'Royal Free Disease' as a postulated new viral illness that she and her colleagues could never substantiate. Admittedly she saw it from the virological side but I was getting the same message from colleagues at UCH, Guy's and Bart's.

I am sure that some doctors did shift the meaning of ME to cover post-viral fatigue but if the WHO classified it as a neurological disease in 1969 I think it likely that they thought they were logging Royal Free Disease, since ME/CFS as we now know it, or if you like ME as we now know it, does not have any specific neurological features. Muscle aches and pains and swollen glands, headaches and inflamed feelings occur with flu and we don't call that a neurological disease.

I think it matters because people being told they have ME are still given the impression that they have some sort of neuroinflammatory disease and we don't have evidence for that. I worry similarly about patients being told they have problems with oxygen delivery when we have no evidence for that. It distracts everyone from the actual clinical problem and how best to cope with it.

That's so interesting to see it from your mother's viewpoint, thank you. I was lucky to get a few understanding doctors, and yes, they did think it was the same thing as Royal Free Disease, and indeed I got referred to the Royal Free Hospital. I did see a few doctors at first who were very patronising and insisted I had 'anxiety' and/or 'depression' and refused to consider that what I had was physical; I had to change GP three times before I found the one who took me seriously. Yes, later in the 1980s some doctors were considering EBV as a cause, but I've never had EBV.

Yes, the meaning of ME has shifted out of recognition since back then, muddying the waters so much that I despair of ever seeing a biomarker and/or actual curative treatment in my lifetime. Here's hoping DecodeME finds something.

Thank you for taking an interest in this wretched subject, very grateful for all you do!

 

[Jonathan Edwards]

And thank you @EzzieD, for the first hand perspective. Gradually, I think I get an idea of what is special about this disease. If I can get a clear enough idea to persuade my younger physician colleagues to take it seriously I shall feel I have been of some use.

 

[Sly Saint]

Facebook group
The Nightingale Continuum
Wendy Boutilier

Yesterday, someone asked me about ME without Myalgia. I didn’t give them a complete answer that I should have. Hopefully this post will help correct that.
“Myalgic” Doesn’t Mean Everyone Has Muscle Pain
* The name Myalgic Encephalomyelitis literally means “muscle pain with inflammation of the brain and spinal cord.”
* However, over time, researchers have recognized that not all patients experience pronounced muscle pain, even though they meet ME diagnostic criteria.
* The core feature of ME is post-exertional neuroimmune exhaustion (PENE) which is a worsening of symptoms after minimal effort — not necessarily pain.
Variable Symptom Patterns
* Some people have mainly neurological and autonomic symptoms (e.g., cognitive dysfunction, dizziness, sleep disturbance) with minimal or no muscle pain.
* Others experience deep aching, burning, or flu-like muscle pain as a major symptom.
* Symptom profiles can also change over time — for instance, early in the illness muscle pain may be absent, then appear later during relapses.
Diagnostic Criteria Support This
* ICC 2011 (International Consensus Criteria) and CCC 2003 (Canadian Consensus Criteria) both describe pain as common but not required for diagnosis.
*ICC wording: “Pain is common but not necessarily
Universal. A person can still fully meet criteria for ME without muscle pain if they have the defining neurological, immune, and energy production abnormalities.
How to Explain It Clinically
“I don’t have muscle pain, but my exhaustion after any activity is extreme,” that’s still consistent with ME — especially if there’s:
* Delayed symptom worsening after exertion (PENE)
* Cognitive dysfunction
* Orthostatic intolerance
* Immune or autonomic abnormalities
So in summary:
Yes — a person can have ME without myalgia. The “myalgic” part of the name reflects early clinical descriptions but isn’t required for diagnosis. The defining feature remains post-exertional neuroimmune exhaustion.
The ICC 2011 Carruthers eg el’ https://pubmed.ncbi.nlm.nih.gov/21777306/
ICPrimer 2012 https://www.investinme.org/.../Myalgic...
“Clinical Profile and Aspects of Differential Diagnosis in Patients with ME/CFS from Latvia” — a study of 55 people diagnosed with ME/CFS showing that 96.4% reported myalgia, meaning around 3.6% did not in that study. This supports the point that while very common, myalgia is not universally present. https://www.mdpi.com/1648-9144/57/9/958?

People often use the term “post-exertional malaise” or PEM when talking about what happens after exertion in Chronic Fatigue Syndrome (CFS). But what defines Myalgic Encephalomyelitis (ME) is not just malaise or tiredness — it is Post-Exertional Neuroimmune Exhaustion (PENE). The two terms sound similar, but they describe very different experiences and biological processes.
Post-Exertional Malaise (PEM) — in CFS
In CFS, PEM generally means feeling worse after doing too much. A person might feel more fatigued, achy, or mentally foggy for a while. It’s unpleasant, but it’s often viewed as a temporary increase in symptoms, similar to what healthy people feel after overexertion — only stronger and longer-lasting. It usually improves with extra rest.
Post-Exertional Neuroimmune Exhaustion (PENE) -ME
In ME, the reaction is far more severe and far more dangerous. PENE means that the nervous system and immune system become pathologically overactivated and then fail to recover after even very small amounts of activity; physical, mental, or emotional. This is not just feeling more tired. It is a full neurological and immunological crash. The exhaustion of PENE is not ordinary fatigue. It feels like the body’s energy system has been “shut down.” People may feel paralyzed, poisoned, or flu-like, and can become bedbound or unable to speak, move, or think clearly.
It can take 24 to 72 hours or more after the activity for the crash to appear, and recovery can take days, weeks, or months. During PENE, there is measurable evidence of biological change:
* The nervous system shows reduced brain blood flow and poor communication between brain regions.
* The immune system shows abnormal cytokine responses as if the body is fighting an infection that isn’t there.
* The cellular energy system (mitochondria) cannot produce energy normally, and lactic acid builds up in the muscles.
* The autonomic nervous system loses control of heart rate, blood pressure, and temperature, leading to dizziness, chills, or flushing.
Even very small activities — like brushing teeth, talking for too long, or sitting upright — can trigger this crash. The worsening is disproportionate to the effort and is not relieved by rest or sleep.
This distinguishes ME from CFS.
Summary in Simple Words
*Post-Exertional Malaise in CFS means “I feel worse after I do things.” *Post-Exertional Neuroimmune Exhaustion in ME means “My body crashes after even tiny efforts because my brain, nerves, and immune system can’t recover.”
*PEM is a symptom. *PENE is a systemic breakdown.
………..
Managing Post-Exertional Malaise (PEM)—the symptom seen in CFS—is different from managing PENE in ME, though some strategies overlap. PEM is generally less severe and more responsive to rest than PENE.
For PEM
Recognize early signs
* Fatigue, brain fog, muscle aches, headaches, or irritability can signal PEM is starting.
* Stopping activity early, before symptoms get severe, can reduce the intensity and duration of PEM.
Rest
* Rest is the most important management tool for PEM.
* Light physical rest, lying down, or short naps can help reduce symptom severity.
* Unlike PENE, PEM usually improves with sleep or a short recovery period.
Activity pacing
* Spread activities evenly across the day to avoid overexertion.
* Alternate tasks that require physical, mental, or emotional energy with periods of rest.
* Keep activity at a level you can tolerate without triggering PEM, even if it feels like you’re underperforming.
Gentle symptom management
* Over-the-counter pain relief or anti-inflammatory medications can help with aches and headaches.
* Hydration and light nutrition support recovery.
* Mild stretching or very gentle movement may help maintain flexibility without triggering PEM.
Emotional support
* PEM can cause frustration, guilt, or anxiety.
* Support from friends, family, or patient groups can help reduce stress, which may otherwise worsen symptoms.
Monitoring and adjustment
* Keep a log of activities and symptom changes to identify personal triggers.
* Gradually adjust activity levels based on tolerance, but avoid “push-crash” cycles.
……….
Key difference from PENE:
* PEM is a temporary worsening of symptoms that usually improves with rest and time.
* PENE in ME is a pathological crash caused by neuroimmune dysfunction, often triggered by even tiny amounts of exertion, and may not improve with rest quickly.
……….
For PENE
Pacing is staying within your energy limits..
Pacing means learning to live within what’s called your energy envelope; the small amount of energy your body can safely use without crashing. To do this, you notice the signs that your body is nearing its limit such as brain fog, dizziness, pain, or feeling heavy, and you stop before those signs worsen. It’s better to rest too early than too late. If you overstep your energy limit, even by a small amount, it can trigger a delayed crash lasting days or weeks. If you drain it completely, it takes much longer to recharge, and sometimes it never goes back to its previous level.
Complete rest
*Rest is not optional in ME. It is a medical necessity.
*Resting early, often, and deeply helps reduce the severity and frequency of crashes.
*Rest means lying still, ideally in a quiet, dark space, without stimulation such as talking, screens, or thinking tasks.
*Some people need to lie flat to prevent orthostatic symptoms (low blood pressure or fast heart rate when upright).
Cognitive and sensory rest
Mental effort can trigger the same kind of crash as physical effort. Activities like reading, concentrating, listening, or being around bright lights or loud sounds can all cause worsening. Give your brain rest periods between short tasks, and use earplugs, soft lighting, or dark glasses if needed.
Energy-saving habits
*Group small tasks together when you can, and simplify your environment.
*Use mobility aids or supportive devices if they allow you to conserve energy.
*Sit rather than stand whenever possible.
*Ask for help with meals, cleaning, and errands to prevent overexertion.
Recovery after a crash
*If a PENE episode happens, go into full rest mode as soon as you can.
*Lie flat, stay quiet, avoid stimulation, and eat or drink as tolerated.
*Do not try to push through or “recondition” — doing so can cause long-term worsening.
*The only reliable recovery tool is time and gentle rest.
Emotional care
Crashes can feel frightening or discouraging. Try to remind yourself that this reaction is a biological process, not your fault. Compassion, calm environments, and gentle reassurance help reduce stress, which can also lessen symptom severity.
In summary
*The best way to manage ME and prevent PENE is by balancing every bit of activity with equal or greater rest.
*Rest before you think you need it.
*Stop before your body forces you to.
*Over time, this careful pacing helps protect what little energy your body can still make — and that protection is your strongest form of treatment.
In Myalgic Encephalomyelitis (ME), Post-Exertional Neuroimmune Exhaustion (PENE) is not just feeling tired after activity. It is a biological crash in which the nervous system, immune system, and energy metabolism are all overwhelmed.
PENE can be so severe that the body’s ability to recover is greatly reduced. Repeated or extreme PENE episodes can weaken a person over time, sometimes to the point where full recovery is impossible. In the most severe cases, this can leave a person bedbound or completely dependent on care, with profoundly limited physical, cognitive, and sensory function.
This is why avoiding overexertion and pacing within the body’s energy limits is critical. PENE is dangerous because it can progress the illness and cause long-term deterioration, unlike fatigue or the milder PEM seen in CFS.
Even small activities such as talking for too long, standing, or mental effort can trigger PENE, and the worsening may not appear immediately, sometimes taking 24 to 72 hours to fully manifest. Once triggered, there is no quick fix; recovery relies on careful rest and time, and even then, some losses may be permanent.
International Consensus Criteria for ME (2011)
* Carruthers, B. et al. Myalgic Encephalomyelitis: International Consensus Criteria.
* Key point: This paper explicitly distinguishes PENE from fatigue or PEM, describing it as the hallmark symptom of ME and warning that overexertion can cause severe, long-lasting crashes
https://pubmed.ncbi.nlm.nih.gov/21777306/
National Institute for Health and Care Excellence (NICE) – 2021 Guideline for ME/CFS
* NICE recognizes post-exertional symptom exacerbation (PESE) as a key symptom.
* They caution that overexertion can worsen illness severity and cause long-term decline, aligning with the concept of PENE.
https://www.nice.org.uk/guidance/ng206
Educational Articles / Reviews
* Newton JL, et al. Management of ME: recognizing post-exertional neuroimmune exhaustion.
* Explains why PENE is different from fatigue and why pacing and rest are essential for preventing long-term harm. https://25megroup.org/.../PENE-is-Post-Exertional...
* Fluge Ø, et al. Evidence of metabolic dysfunction and post-exertional crash in ME.
* Discusses biological mechanisms behind PENE, showing it’s not psychological or voluntary. https://pubmed.ncbi.nlm.nih.gov/28018972/

https://www.facebook.com/groups/1063785371126868/posts/2023741918464537/

 

[Jonathan Edwards]

I do wish people would stop putting out misinformation like this. As long as this goes on physicians will ignore people with ME/CFS and refuse to see them in clinics or do any research. The harm done to other people with the disease is immeasurable.

The myalgic belonged to another proposed illness that turned out not to exist. We need to start afresh without this baggage.

 

[Utsikt]

I do wish people would stop putting out misinformation like this. As long as this goes on physicians will ignore people with ME/CFS and refuse to see them in clinics or do any research. The harm done to other people with the disease is immeasurable.

The myalgic belonged to another proposed illness that turned out not to exist. We need to start afresh without this baggage.

People keep putting it out there because the real doctors don’t do better and help them understand that there’s a lot of biobabble going around.

The responsibility and accountability lies with the medical profession.

 

[Jonathan Edwards]

That does not alter the fact that the people perpetuating these memes are spreading harm.
They have a responsibility too.
First do no harm applies to everybody, not just doctors.

And the problem here is not the psychobabble. It is the neuroimmunobabble, which is just as bad. The psychobabble is largely a response to biobabble.

 

[Utsikt]

That does not alter the fact that the people perpetuating these memes are spreading harm.
They have a responsibility too.
First do no harm applies to everybody, not just doctors.

And the problem here is not the psychobabble. It is the neuroimmunobabble, which is just as bad. The psychobabble is largely a response to biobabble.

I agree that spreading misinformation causes harm in this context.

But the patients have a very substantially lower innate ability to recognise the biobabble for what it is. They lack the biological knowledge to understand what’s plausible or not, and understanding the fatal flaws of the studies is often much harder because it gets into more complex issues like statistics.

I do think that the patients that take up prominent and visible positions in the community have a heightened responsibility to make sure they get things right, but most patients are passive bystanders that place (unfounded) trust in others. You can hardly fault them for their ignorance.

I also don’t think the psychobabble is a response to the patients sharing bio-misinformation. The BPS crowd could just as well have said «you’re wrong about this, but that just mean that we don’t know yet why you’re sick».

 

[Trish]

I don't blame the patients here. They are just repeating the ICC criteria created by clinicians.

 

[Jonathan Edwards]

But the patients have a very substantially lower innate ability to recognise the biobabble for what it is. They lack the biological knowledge to understand what’s plausible or not, and understanding the fatal flaws of the studies is often much harder because it gets into more complex issues like statistics.

I still disagree. People with illnesses should not be setting up facebook pages purporting to provide information that is just a re-hash of physician bullshit. And it is notable that the high profile people who do have these pages mostly do that. I am certainly not blaming patients who may get taken in and keep quiet - that is not the issue. If these meme-broadcasters lack biological knowledge then they have no business to be advising. There is no excuse - the opposite if anything.

I have come to the point where I think this ought to be confronted. Otherwise the task for people like Chris Ponting and myself to recruit academic physicians to get some answers from studying well selected cohorts seen in a clinic will be much more difficult. It is time for the community to say to the Facebook meme-mongers to shut up if they don't know what they are talking about.

This is a matter of war tactics. We are at war with a profession that is too dumb to understand what they are doing wrong. And rather than eradicating them we have to end up with some of them on our side. Every day I try to think of ways to make an impact at my own University. I seem to have struck lucky with a geneticist but the people who are charged with looking after ME/CFS refuse to be involved as much as anything because of the perpetuation of these memes.

Why do people want to embroider their illness with this bogus physiology? I think that needs answering. It doesn't happen in other diseases much. And the embroidering leads to stories in the local papers every week about young Jenny who struggles terribly with Ehlers Danlos Synrome , to such an extent that she finds it very hard to do show jumping or run her marathons. And the natinal papers lap it up and have all sorts of bogus science stories. To be frank it doesn't surprise me that my colleagues are fed up.

The meeting on Thursday was started with two people with ME/CFS or Long Covid talking about their years of 'lived experience' and how that should be treated equally as evidence with trials. You don't get that with other diseases and it doesn't help anyone. It is a bit like ME/CFS in the USA being put into 'Women's Health' and therefore being delegated to a closet BPS physician in the division of complementary medicine who comes out with a grand NIH study that tells us nothing.

Now is the time to make it clear that ME/CFS is on a par with other diseases and that the patient community wants reliable evidence, not myths. It is also a good time to make it clear that the patient community is playing a big part in driving that evidence. Noises off are not what we need.

 

[Utsikt]

People with illnesses should not be setting up facebook pages purporting to provide information that is just a re-hash of physician bullshit. And it is notable that the high profile people who do have these pages mostly do that.

If these meme-broadcasters lack biological knowledge then they have no business to be advising. There is no excuse - the opposite if anything.

We’re mostly on the same page about the broadcasters, but as you say they pretty much only repeat what trained doctors and researchers say. Very few of them create their own theories etc.

Why do people want to embroider their illness with this bogus physiology? I think that needs answering. It doesn't happen in other diseases much.

The meeting on Thursday was started with two people with ME/CFS or Long Covid talking about their years of 'lived experience' and how that should be treated equally as evidence with trials. You don't get that with other diseases and it doesn't help anyone.

I can’t think of any other major disease that has been treated as badly for as long as ME/CFS. Maybe you’re aware of some?

I think the answer to why it happens is pretty straight forward. In my own experience, when you get told that your disease is either imaginary or psychosocial when you’re as confident as you can be that it’s not, your instinct will be to look for authoritative sources that support your claim of actually having a biomed disease.

When you go looking, you’ll find the people that shout the loudest: the biobabblers.

These are people that tell you what you want to hear: that your disease is real, they’ve got tests that show that there’s something wrong, and so on. And some of them have (ineffective, expensive and potentially dangerous) treatments you can try - a shot at getting some of your life back.

The desperation, gaslighting, systemic discrimination and severe disability drives the patients into the arms of incompetent and/or predatory HCPs.

Now is the time to make it clear that ME/CFS is on a par with other diseases and that the patient community wants reliable evidence, not myths. It is also a good time to make it clear that the patient community is playing a big part in driving that evidence. Noises off are not what we need.

If you removed the biobabblers, the patient community would for the most part stop spreading the misinformation. But I honestly don’t know how to achieve that.

If you want to attempt to educate the key patients, you’d need a lot of time. I’ve tried to explain the basics about how bad the research is to many people around it, and only a single person has kind off understood it because they have already realised the same thing for their completely unrelated field. The rest of them simply don’t get it, and it feels like trying to teach integrals to someone struggling with basic multiplication.

Getting people to engage with you for long enough for them to learn is also going to be a challenge. And it’s not made easier by living with ME/CFS.

There’s also the hostility some might face when calling out the biobabble. Many members have spoken about how taxing it is to try to be a voice of reason in other places.

 

[Trish]

The meeting on Thursday was started with two people with ME/CFS or Long Covid talking about their years of 'lived experience' and how that should be treated equally as evidence with trials.

Oh dear.

Yes, I agree people promoting unevidenced science need to be challenged. Is it better to start with patients throughly convinced they are right and are being helpful, or with the clinicians who wrote the ICC criteria? If the clinicians would come out openly and say a lot of the science claims in the ICC are unevidenced that would be a good start, but they are probably just as convinced they are right as the patients are.

In the UK I think we need to start by challenging BACME's 'science' and clinical advice, but that's for another thread.

 

[Robert 1973]

If these meme-broadcasters lack biological knowledge then they have no business to be advising. There is no excuse - the opposite if anything.

True, but ME/CFS is not unique in that regard. Social media is rife with people acquiring legions of followers spouting nonsense on all manner of subjects – and the problem is not confined to social media.

Why do people want to embroider their illness with this bogus physiology? I think that needs answering.

They don’t want to embroider their illness with bogus physiology. They are desperate for answers and are desperate to counter the psychological myths which they know to be untrue. You don’t need any expertise to know that BPS theories are bogus (although many people get the arguments wrong). But you do need expertise – or at least the intelligence, capacity and motivation to follow the science – in order to determine whether or not doctors and scientists are talking sense about biology. Most people are not able or willing to do that for themselves, and therefore rely on the authority others who they perceive to be on their side.

I have been guilty of this myself, and would be more guilty now if it weren’t for this forum. But I still rely to some extent on the expert opinion of those whose knowledge and judgement I trust – as I think we probably all do to some extent on many subjects about which we have little knowledge.

The meeting on Thursday was started with two people with ME/CFS or Long Covid talking about their years of 'lived experience' and how that should be treated equally as evidence with trials

If they were suggesting that their lived experience of what has led to improvement or deterioration should be treated equally with evidence from trials then I would agree that that is completely wrong. But I think lived experience should be treated equally in other ways. Lived experience is the only evidence we have of what people are experiencing and that is what we’re trying to understand and alleviate.

Now is the time to make it clear that ME/CFS is on a par with other diseases and that the patient community wants reliable evidence, not myths

Unfortunately it seems that many people (with or without ME/CFS) aren’t particularly concerned about reliable evidence. In many cases it seems that people want to be told want they want to believe is true or what would be convenient if it were true. But we certainly need reliable evidence and that is what will benefit patients.

While I agree that falsehoods and woolly thinking on all sides need to be challenged, I also think it is important to try to challenge people in the right way. I’m not suggesting that we should be equivocal in our criticism but I also think we should try to be as polite and empathetic as possible – particularly where there is no obvious malice or conflict of interest. We need to try to persuade people of the validity of our views not to entrench theirs by getting their backs up.

As I’ve written before, I used to have prejudices about ME/CFS and I used to be much more credulous about what was know from biomedical ME/CFS research. I’m sure I still get a lot wrong, but I always try to challenge people in ways that would have been persuasive to my former self.

It is also a good time to make it clear that the patient community is playing a big part in driving that evidence. Noises off are not what we need.

Absolutely, but not necessarily the patient community as a whole.

 

[bobbler]

People keep putting it out there because the real doctors don’t do better and help them understand that there’s a lot of biobabble going around.

The responsibility and accountability lies with the medical profession.

But it also muddies the message from others who aren’t those bps or other doctors

If at least all allies were saying the same thing then they couldn’t use the excuse of ‘well you can’t even agree on what you all want it to be, so…’

 

[hotblack]

Agree with a lot said here. Also talk of ‘lived experience’ is increasingly common but particularly in groups who have been dismissed and frankly, have nothing else to cling on to.

But I mainly want to add that I think trust is an important step. Most of us have lost that trust in systems and people which let us down repeatedly. And do so repeatedly. Like few really understand.

People within those systems need to show some humility, accept those systems are broken and earn that trust back. That will help stop people falling for this stuff. That is when things will change.

There’s enough of us as patients that can try to push back on it too. And we do. But until there is that recognition and those efforts made we won’t get very far with the wider patient community.

People who are used to being lied to would rather lies that suit them than lies that don’t. Even if they know they’re lies.

 

[hotblack]

Thinking about this a bit more reminded me of the arguments I’ve made about the psychology of persuasion and people’s emotional investment. That we as patients probably should focus less on those who will never change their minds, those medical professionals who have been vocal and influential but who are emotionally invested and have often invested their careers in their odd views of ME/CFS. Those people will always exist but they are not the majority. Others will be willing to change their minds and probably forget they ever had these funny ideas if given reason and opportunity to do so.

The same goes in reverse. There may well be a small group of patients who strongly hold some odd ideas and perhaps some of them have made a platform for themselves because of it. But they are not the majority. Most patients will be willing to drop these odd ideas if given reason and opportunity to do so. The question is how we give them those reasons and that opportunity. That’s what we need to focus on rather than telling people they are wrong which just rankles everyone.

 

[hotblack]

A slight tangent but I’m also reminded of this from @Andy which expresses it so well and changed how ai think about things

I think a distinction needs to be made here between patients speaking to their own experience, which may well include being told that there is nothing wrong with them and it's all in the head, and advocates who are trying to speak on behalf of the community. The first should be allowed to tell their own story, while the second should indeed move beyond that narrative and on to practicalities on what is needed and what needs to change.

We need charities to be better and clearer on all this.
But patients do need to be able to tell their stories and talk of their lived experiences.

 

[Jonathan Edwards]

I appreciate the generosity of spirit of the membership but I think there is an irony here.

The people with ME/CFS and associated charity advocates putting out misleading information are not in a position of ignorance. They are well aware that members are here, sensibly and with generosity of spirit, considering the evidence and rejecting the memes. There are pwME/CFS who are professional biologists putting out misinformation, in possession of all the knowledge needed to see it is unfounded. This forum exists because certain people with that generosity of spirit and desire for truth were thrown out. Human nature is not always attractive. So yes, there was malice. I got some of it but I could ignore it. It destroyed other people's dreams.

Just this last week I pointed out to MERUK that an article of MCAS was unhelpful and misleading. Their response was polite but basically indicated that they thought I was an interfering busybody and that they could put out whatever stuff they wanted. It was also mentioned, as justification, that members found it 'validating'. So it seems that misinformation is justified because people lap it up and believe it.

That might be harmless but it isn't. Pretty much all the cases I have heard about involving people with ME/CFS coming to harm from lack of feeding support occur in the context of this misinformation. It is the bogus nature of this misinformation that justifies the safeguarding orders that take children away from families. I am, of course, not justifying those safeguarding orders or the system that allows them to continue, but if misinformation is coming from people with ME/CFS and their charity advocates when those people can see here that there is a better way to understand things then I don't think we can just say "poor dears they don't know any better". Physicians have sold these ideas because people want validation, even if it is bogus - I even had a member of Workwell try to justify that. The responsibility is not just on one side. And even that is beside the point because the issue is to try to reduce harm, regardless of whose fault it was in the first place.

I want to talk to Sonya about this (amongst other things) because she doesn't dodge issues and she has an amazing grasp of the complexity of what is going on. Her presentation on Thursday cut through everything. In a way all we needed to hear was Sonya. She told us that getting funding is still tough for the wrong reasons but nobody was going to stop her and Chris finding money. The rest was Lilliputians jumping through hoops (apart from the data from Edinburgh and Precision Life we mostly already knew about).

 

[hotblack]

Do you @Jonathan Edwards or anyone else have any practical suggestions on what we can do to get the charities representing us to change their tune on these points?

I know I’ve contacted them when they’ve done things I thought were unhelpful and the responses have guided me to how I think about some of them now. But it doesn’t seem to have improved things. Much the same as has happened with those services supposedly responsible for my care and wellbeing. So we can feel somewhat trapped in the middle at times