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So, we had another depth charge on the 11th July 2023 with the article by Rachel Hall in the Guardian ‘ME/CFS guidance that discourages exercise is flawed, says researchers.’ This was in response to an article ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’ in the Journal of Neurology, Neuroscience & Psychiatry which is part of the BMJ Journals by self-declared 51 experts. Every time something like this happens it is like a sonic wave permeates through the community harming and creating more distress & trauma. Keeping with the maritime metaphors another way to look at this is what can be called the iceberg effect. What is easily visible to the ordinary person and the scientific community and what is invisible, the ice below the water - the vast majority of the iceberg - the patient.
The Tip of the Iceberg
It is important to remember that when articles in the media come out which perpetuate a false view of ME/CFS most of the harm comes through people glancing at headlines or skimming over the piece taking in the main points. Repeated articles like this create a drip drip drip effect of social perception. People will remember '“oh I saw an article that said people with ME/CFS should exercise so it can't be harmful.” Most of this will dutifully hang out in the edge of people's consciousness. There is so little written about ME/CFS so any article in the mainstream has significant impact through the nudge effect. It is important for Long Covid as the same agenda is being pushed - that rehab & exercise are beneficial - by the same people. There is also significant crossover from FND Drs in the JPPN article trying to rebrand Long Covid into FND.
PR Junkies
We saw media in comment to the JPPN in articles by the Guardian, Evening Standard, Independent, Yahoo news, The Herald & the BMJ News. One way to become visible is to have good PR behind you. The way the news works as insightfully pointed out in Nate Bear’s Substack is that you generally need strong institutional PR or well-established connections within the industry. We saw that these researchers had Kings College place a press release out for them. We know with the involvement of Wessley that he has powerful PR connections with the Science Media Centre & Paul Garner is a full on media junkie. It’s worth noting that things getting into the press don't necessarily have to be true or relevant to the reality of patients' lives it's the PR network that counts.
Fringe views and medical misinformation
Yet what we are seeing at the top of the iceberg is essentially fringe views. Yes we are talking full flat earth, anti-vax, climate denial, tobacco industry misinformation & tactics. We saw in the Guardian article that NICE robustly defended their stance on the ME/CFS guidelines.
We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients.
One only has to look at the extensive process NICE went through and the scientific evidence review that they did to see this. David Tuller’s interview with Adam Lowe evidences this perfectly. Yet most people won’t see this and take at surface value this depth charge released into the media. Yet science has moved on - it’s all there in the international consensus & the charities, patients & political view. One only has to look at the Rethinking ME report by the APPG. What is presented in the JPPN our fringe views by people who cannot let go of their own theory.
Weaponising Patient Harm
The decision to change the guideline has had a direct effect on doctors’ and therapists’ ability to treat patients. Services are no longer able to provide a full range of evidence-based therapeutic interventions. Trudie Chalder
This could have a devastating impact on people’s lives in that they will no longer be able to access the treatment that could help them the most. Trudie Chalder
Which has led to guidance that could harm rather than help patients. Paul Garner
"Jesus, Mary Joseph & the wee baby donkey" as Capt. Hastings would say. This really does want to make me put my head in my hands. Talk about threatening to press the Trident nuclear button – it is essentially placing a cloud of doom and threat over the public, patients and medicine if we don’t do what they say. It’s also complete bollocks. it's like saying if you get on that boat you’re going to fall of the edge of the earth because it’s flat. Yes – it's that wrong.
Eminence
It is worth asking why this all gets to the top of the iceberg? The answer is eminence. We have 51 academics and researchers trying to bulldoze scientific consensus & the reality of patients. Eminence over evidence is a logical fallacy and it is clear that the journalists did not do their due diligence and check whether this view should be platformed, if this view was harmful and even is this few true. Just one phone call to somebody with myalgic encephalomyelitis would have cleared this up. If they had the strength to take the phone call.
These researchers have been relying on their eminence for decades. When we look back in history at all the horrific things doctors have been able to get away with like leeching, bloodletting and treating hysteria with lots of milk and raw meat - think your worst nightmare Victorian Doctor - they get away with this due to eminence. It is one of the oldest tricks in the book & it had it’s hayday in the professionalisation of medicine in the 19th Century. Obviously epistemic authority comes through training and experience and is often highly relevant, yet this isn't always the case especially when epistemic trespass occurs. This is when experts in one field trespass into an area they do not have the expertise in. It must be remembered that most of these 51 I’m not experts in me they have no training in immunology they are predominately psychiatrists. It is like listening to an vet when you want to build a bridge - when really you need an engineer.
Bottom of the iceberg - what people don't see.
Patient voice
The stunning emission in both the Hall Guardian article and the JPPN is the patient voice. Did anyone actually ask patients what they thought? How these treatments really function in their lives? Nope. It is historically accurate to say that the disabled voice, womens voice and the patient voice have been seen as an unreliable narrator. This has been at the core of hysteria and present in medicine since it began. It is still active and is particularly dominant in the field of psychiatry. Psychiatry has great power in that it can state who is mad, who is reliable and who is sane. A section of psychiatry have decided that people with ME/CFS do not know what is good for them and even worse weaponized the patient voice by calling it activist, troll and not to be trusted. Has this been done to another field of patients in the present day? Parkinsons, Cancer, Diabetics?
Image Credit: ‘Silence’ by Sara Riches
Corrections
Most will take the Hall Gardian article at face value and will not see the rapid responses and refutations provided by Professor Brian Hughes, ME Association and ME Action Network. Yet the article made some significant errors that shape the top of the iceberg also known as public perception. There were also corrections that needed to be funnelled to the paper on the day.
Opinion Piece not a study
The article refers to this being a study - this is clearly inaccurate at best it's a opinion piece. At worse it's a load of researchers throwing their toys out the pram.
250 000 not 25 000
It stated that there are 25,000 people with ME/CFS affected in the UK yet the figure of 250,000 is the official estimate. Although this is likely to be a huge underestimate as there has never been an major study into the prevalence of ME/CFS and now with 50% of people with Long Covid developing ME/CFS the number in the UK is likely to be vast.
Media & Charity guidelines ignored
It is worth noting that media guidelines and charity guidelines on ME/CFS were blatantly ignored. We had the obligatory young model who had had the energy to get dressed, wash themselves and then super glue their forehead to their hand.
Misuse of chronic fatigue
We had the use of the phrase ‘chronic fatigue’ which is misleading and a minimisation. Charities specifically warn against using this nomenclature. It is worth noting that the same researchers who pushed for this definition and use of chronic fatigue in the medical and social spheres are in the JPPN article. It is a minimisation because ME/CFS is much more than fatigue, it is a symptom not a definition of an illness. Fatigue is not PEM - it’s a different pathological pathway. Many conditions can have chronic fatigue like Parkinson’s, Cancer and Multiple Sclerosis
Misattributation of expert
Many of the experts listed are not experts in the field of myalgic encephalomyelitis. Although it is questionable if any of them are experts as they do not have training in the most relevant fields such as immunology and even sports science. They are mainly psychiatrists and we are not mentally ill.
Evidence not strengthened
strengthened, not weakened since the 2007 guideline Trudie Chalder
This seems to be a clear case of delusion & marking ones own homework.
Significant evidence on energy management
there was little evidence that this was effective.
Was the researchers claim on energy management. In cloud cuckoo land maybe but this is just plain selective thinking and omission. It clearly shows they are not listening to patients. The BACME (British Association of Clinicians in MECFS) endorse pacing. In fact, it is the get out of jail card when they justify GET – that it isn’t fixed increments, but patients have to manage their energy.
Extensive evidence review & meta-analysis
remarkably little aggregation and meta-analysis of research, falling short of international standards and making it hard to establish what treatments worked.
Another uh –uhhhhh by the Family Fortunes buzzer. NICE knew the importance and controversy surrounding ME/CFS and assiduously dotted & crossed all the I's and t’s. There is extensive documentation of meta-analysis. The evidence review that NICE carried out was 365 pages long. It’s just the same researchers didn’t like their research being called ‘very low quality’. That would have been nice to mention Rachel!
Established definition of ME/CFS used
another weakness involved the use of a new definition of chronic fatigue
Nope, nada, zilch (note purposeful misuse of chronic fatigue) This is just a plain untruth and a big fat red herring designed to mislead. NICE used the IOM (Institute of Medicine) criteria which is nearly a decade old. They just made it suitable for practical use in the NHS by a 4-item criteria.
Objective measures are established to prove exercise harm
too subjective, even though there is no other means of establishing whether a treatment has worked.
Another blatant flim flam – there is CPET which is an objective measure to see if exercise works. All CPET studies in ME/CFS show deterioration over the 2 days. These people are meant to be scientists – yet they don’t seem to know what the scientific method is. If there are no objective measures it is not science. It’s worth asking why there aren’t any well-known methods to detect harm in ME/CFS from exercise? Maybe because the same folks hogged research funding and prevented this from being established. If they are so keen on subjective measures why the fuck don’t they listen to all the patients telling them it damages them?
Rest does not perpetuate ME/CFS
rest can “perpetuate the illness” Paul Garner
Let’s leave Capt. Hastings to respond to that one again.
For a full refutation on the 8 points made in the JPPN article please refer to Prof Brian Hughes excellent work on this.
When a paradigm shift rocks your world
As we’re talking about icebergs what has essentially happened is that a Titanic of scientific theory, patient voice and just plain common sense has smashed into the psychiatrist's iceberg, and they don’t like it. Is called a paradigm shift. This is a well-known theory in science and even daily life. It boils down to the fact that people don’t like to be wrong. Thomas Kuhn who proposed the paradigm shift theory keenly noted that science often doesn't change through people accepting scientific evidence without discontent and disgruntlement. What happens is people will cling desperately to their theory with all there might like clinging to a life raft regardless of whether they are right or not. Professional reputation is what matters not the scientific method. This is understandable on many levels. Yet the issue matters significantly when patients are harmed by a previous paradigm. And this is what is happening.
Ginormasaurus of a conflict of interest
One thing that certainly wasn't visible to Joe public through the media releases was the phenomenal size of the conflict of interest in the JPPN article. If anything, this was the real gift of the piece. It was huge. A 1554-word COI, amazing since the original article was only 3500 words. If anything, the researchers did a significant amount of work for us in highlighting all of their bias, perks and friends with benefits. Thank goodness that the BMJ has an incredibly strict declaration process. It just shows the weight of why these people have to essentially lie to save themselves because they have too much invested in being right.
The Science
Amazingly enough the science is actually at the bottom of the iceberg. It wasn’t referred to or looked into in the article and most people aren't aware of it including doctors. Yet the science is very clear Post Exertional Malaise exists and exercise harms people with PEM. At no point in the article was PEM referenced. It is a little like not mentioning insulin when talking about diabetics because IT’s really as simple as this. Listen to the patient when they tell you something is harming them. Yet because exercise is seen as universally beneficial, although i wouldn’t like to run a marathon when i had a broken leg. In some cases, it isn’t. With myalgic encephalomyelitis it is downright dangerous. Yet there is a significant perception gap in how exertion and exercise actually feel to somebody with ME/CFS. It is like asking them to scale a burning wall & nobody else sees the fire. The pain & suffering is just horrific that someone has to go through when they exercise with ME/CFS & beyond most human comprehension. Yet because we do not have a MHRA yellow card system in reporting harm the patient voice is not listened to.
Why is this important?
It is important that ME/CFS is reported on clearly as national media shapes public perception. This isn’t just a disagreement it is giving a platform and a voice to a treatment that actively harms patients - sometimes to the point of permanent disability. It is like letting psychiatrists we think giving sugar to diabetics or thalidomide to mothers is a good idea and when patients disagree, they’re prone to “sensitivities”. A key point is that it doesn’t just erode public trust it erodes medical trust. In Long Covid & ME/CFS we hear case after case after case of patients being told by their GP & Drs they should exercise and being having their condition deteriorate through this. Doctors & family will see this media and think O it’s fine to make people with me and Long Covid exercise. It perpetuates the myth and fairy tale that people listen to. Yet it is also institutional trust that gets washed away. We recently had the Society of Occupational Medicine give Wessely a honorary membership and then went to block ME/CFS patients because they didn't trust their voice. If things are to change then we need institutions to listen to patients.
What is the key of the iceberg effect? Repression & supression.
Fairy Tales
Instead of leaning on Freud in some hysteric neurotic miasma let’s borrow from Jung and infer that we are in some mythic struggle for individuation & truth. It’s right out of the fairy tales this battle and it’s not the patients who are the big bad wolf. Yet as Prof Brian Hughes states
The cries for help are getting louder. And that’s a good sign.
We have a strong rebuttal from NICE & the ME Association & ME Action Network & from the most important people the patients, whose voice has been compiled here. Yet for everyones sake let’s hope the hubris, arrogance and self preservation, the key downfalls of the hero are let go of and progress can be made. The treasure is in sight and at that point the cries are the loudest - they know they have lost but can’t admit it. Yet for everyones sake we don’t need a Planckian conclusion to the change of the paradigm shift.
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