The disappearance of ME/CFS

[Tal_lula]

Thanks to @Tal_lula for posting a letter from the Bristol NHS ME/CFS Service explaining why a person who meets ME/CFS criteria following a Covid-19 infection cannot be given an ME/CFS diagnosis. I think this is very important evidence.

Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell
A copy of the original letter is attached to the post there and there are some posts commenting on it. I have copied the text here, to facilitate quoting.



It is difficult to imagine how more errors of fact and logic could be fitted into a brief letter than what are there.

In an unexpected twist, one of my best friends has (sadly) just been diagnosed with "Long Covid/ME/CFS" by none other than...The Bristol ME Service!!! The OT (not one I know) who diagnosed my friend said that it's "essentially the same thing and an acute Covid infection was clearly the trigger". Paradoxically, they then said (like the letter) that one of the main differences is that they expect the Long Covid cohort to recover whereas ME/CFS is expected to be a lifelong condition. Even my friend shrugged his shoulders at that.

 

[Hutan]

Evidence of how ME/CFS can be disappeared.
UK : South Coast fatigue service'

 

[Yann04]

I was rethinking about that appointment I had where I got diagnosed with FND and I remembered an interesting detail.

(Note this is significant because the doctor I saw is officially a researcher in the neurological consequences of COVID, helped write the country guidelines for long COVID, and teaches the medical school).

Anyways what I remembered was that he didn’t actually deny my ME/CFS diagnosis. He said CFS is a part/type of FND, and not a very useful one, so I should use the FND label in the future. He then prescibed GET/CBT, and when I mentioned pacing, he told me pacing didn’t mean using a wheelchair like I was, but doing a little bit more each day until you can go back to work.

(Also this person had terrible bedside manners, after making me do exercise testing (I was already severe at this point) we went back into his office and I immediately laid down on the examination bed thingy and he told me “Sit up, I don’t speak to patients laying down”)

 

[bobbler]

I was rethinking about that appointment I had where I got diagnosed with FND and I remembered an interesting detail.

(Note this is significant because the doctor I saw is officially a researcher in the neurological consequences of COVID, helped write the country guidelines for long COVID, and teaches the medical school).

Anyways what I remembered was that he didn’t actually deny my ME/CFS diagnosis. He said CFS is a part/type of FND, and not a very useful one, so I should use the FND label in the future. He then prescibed GET/CBT, and when I mentioned pacing, he told me pacing didn’t mean using a wheelchair like I was, but doing a little bit more each day until you can go back to work.

(Also this person had terrible bedside manners, after making me do exercise testing (I was already severe at this point) we went back into his office and I immediately laid down on the examination bed thingy and he told me “Sit up, I don’t speak to patients laying down”)

Sounds like someone who ‘does what they want’

I find this outright saying they have ‘beliefs’ from some bps character’s extraordinary- because it is a belief system they’ve been selling

one that’s separate from science / using scientific principles and methods and isn’t a proper religion

do they really think that if they just say you’ll increase then go back to work that’s now the truth and if said person doesn’t it’s an attitude issue not them failing on their job part where they have done either science or medicine

it also sounds like they’ve decided people have to use FND now because otherwise you won’t get access to this ‘treatment’ he justifies his kick up the backside attitude as …. So it’s ok that ‘new term’ has to be used? Which really shows how habitual and without thinking oh at least some in the profession just take word and skirt things which are actually regulations and scientific learning points. Ie won’t be educated, won’t be told what to do.

and lots won’t unless someone imposed boundaries and penalties gif certain personality types ie you won’t get to treat of diagnose certain categories of patients if you won’t stop being stubborn and will update your learning .

it’s not surprising that when we see Backe trying to pull the other one on expecting patients to act appropriately and be the ones eating humble pie to them as if they were lucky to be harmed instead of the other way around - and no one is just saying let’s get some better thinkers in there - that in other parts of the tree there’s this?

 

[bobbler]

In an unexpected twist, one of my best friends has (sadly) just been diagnosed with "Long Covid/ME/CFS" by none other than...The Bristol ME Service!!! The OT (not one I know) who diagnosed my friend said that it's "essentially the same thing and an acute Covid infection was clearly the trigger". Paradoxically, they then said (like the letter) that one of the main differences is that they expect the Long Covid cohort to recover whereas ME/CFS is expected to be a lifelong condition. Even my friend shrugged his shoulders at that.

Am I remembering rightly that was it you who went thru then saying they didn’t diagnose those with LC with me/cfs ‘because of the figures/not mixing cohorts’ or something? I can’t remember how long has passed between that and this of whether the change is different OT or suddenly they’ve different funding or layout of anything?

 

[Yann04]

one that’s separate from science / using scientific principles and methods and isn’t a proper religion

It’s compatible with the literature in a small psychsomatic echo chamber. They are the self appointed experts on FND (since they created it), and therefore they must be correct.

Their papers serve as a self admirtion society, consistently hyping up each others theories without bringing sound evidence.
This happens until whatever they say becomes so embedded in their literature, repeated hundreds of times, that it must be true, and no one bothers to question it.

 

[bobbler]

It’s compatible with the literature in a small psychsomatic echo chamber. They are the self appointed experts on FND (since they created it), and therefore they must be correct.

Their papers serve as a self admirtion society, consistently hyping up each others theories without bringing sound evidence.
This happens until whatever they say becomes so embedded in their literature, repeated hundreds of times, that it must be true, and no one bothers to question it.

But that literature is generally not scientific much of it is plain propaganda selling a belief system without either containing proper research or the conclusions being based on it if there is any underneath it. Much of what I’ve read would count as ‘manifesto’ rather than trial or scientific project

 

[Yann04]

Yes for sure. But it’s got the aesthetic of and the cultural recognition as “science” therefore it is accepted as scientific in our cultural paradigms, even though it is incompatible with the scientific method.

“sciencewashing”?

 

[bobbler]

Yes for sure. But it’s got the aesthetic of and the cultural recognition as “science” therefore it is accepted as scientific in our cultural paradigms, even though it is incompatible with the scientific method.

“sciencewashing”?

Or “para science” / “pseudoscience”

it’s an important term for us to get right anyway - I watched the channel 4 documentary “undercover:exposing the far right” and that focused on an org whose main two branches were: marketing , research (to be able to cite claims etc)

so differentiating any old ‘paper’ from science that stands up seems a question that’s going to become increasingly needed , and having a term /terms things that charade as that or are just all belief system and claims without the substance underneath in the form of proper science needed too in order to single them out

 

[SNT Gatchaman]

“Sit up, I don’t speak to patients laying down”

Oh dear. (Speaking as someone for whom close to 100% of patients were lying down when we were speaking.)

 

[forestglip]

See the following relevant thread:

Sweden: Have the ME and CFS clinic in Gothenburg found a loophole to avoid the diagnosis ME?

In 2024, a new ME clinic was opened under the auspices of the Västra Götaland region. At the time, the website stated that the focus was on investigation and time-limited treatment and that patients would then have continued care via primary care.

Here is my summary of the information that was available in May 2024. Auto translated link: New ME clinic in Region Västra Götaland

In the spring 2025, there were rumors that the clinic was removing ME diagnoses and I contacted the clinic and asked questions about their medical investigation process. What emerged from the contact with the responsible manager and physician is very worrying and today I have published a series in three parts where you can read my communication with the clinic but also my analysis of their arguments.

In short, it seems that the clinic thinks it has found a loophole in the Canadian criteria that allows them to avoid establishing the diagnosis of ME in their patients. This is despite the patients meeting the criteria for ME and living with PEM. Instead they seem to use the term persistent physical symptoms, or functional somatic symptoms, which they say are differential diagnoses to ME

Here is a link to an auto-translation of the first part: What is really happening in VGR's ME care? Part one (The other two parts are also published and links is to be find in this post)

 

[Hutan]

From the Austrian news thread

A recent report on the situation with the Austrian Pensions Insurance (PVA) suggesting that ME/CFS diagnoses are frequently ignored or changed to psychosomatic conditions (but some possible cause for hope that this can be challenged)

The Austrian Pension Insurance (PVA) has been under heavy criticism for its handling of cases involving ME/CFS and Long/Post-COVID patients. Many applications for disability pensions, rehabilitation benefits, and care allowances have been rejected, despite the significant impairments faced by the patients. A joint investigation by APA, ORF, and the Dossier platform published in May revealed that the majority of PVA-appointed medical experts deemed patients capable of working, even in cases where patients reported severe symptoms.

• High Rejection Rates: The rejection rate for applications for rehabilitation benefits ("Reha-Geld") stands at an alarming 75%. Holzinger, representing the "Chronisch Krank" association, which supports about 15,000 individuals, emphasized that this problem is not exclusive to post-viral illnesses but extends across various medical conditions. Especially common are issues with the recognition of work incapacity and care needs, particularly for patients with mental health conditions, rare diseases, or undiagnosed illnesses. However, there is no comprehensive data on which diseases are most affected because the PVA records the diagnoses given by the appointed experts, not the original diagnoses submitted by the patients.
• Diagnosis Issues: The diagnostic process often leads to discrepancies between the conditions patients originally presented with and the diagnoses made by PVA-appointed experts. For instance, ME/CFS or Post-COVID diagnoses are frequently ignored or reclassified as psychological or psychosomatic conditions. In some cases, the diagnosis given is so far removed from the actual condition that it results in inappropriate treatments or rehabilitation measures, potentially causing harm. Holzinger criticized the medical assessments as being of poor quality, often lasting only 15 minutes despite the complexity of the patients' conditions.
• Low-Quality Medical Assessments: Holzinger pointed out that many of the assessments conducted by PVA-appointed experts were rushed and superficial. Patients often attend these appointments with comprehensive medical documentation, and yet the assessments fail to account for the full extent of their condition. This is particularly problematic when both the ability to work and the need for care are being assessed simultaneously.
• Legal Challenges and Successes: Legal action against PVA decisions has seen a success rate of 50%, primarily due to the poor quality of the medical assessments. However, pursuing these cases is costly, with legal fees not covered even when patients win their cases. For those who cannot afford legal representation, there are alternatives, such as the "Chronisch Krank" association, which offers more affordable legal assistance, although it remains a financial burden for many patients.

 

[bicentennial]

It is so crucial - across the world and for the duration - to top up all persistently insufficient incomes for eg the workers, the unemployed, the elders, the children and their parents, the sick or injured. Or amputated, chronically ill, mutated, deformed permanently disabled people.

So we must scrub invested interest in not paying sufficient wages and not topping up income beyond the minimum needed for government to attract all piratical traders of underpaid work

 

[Utsikt]

If the politicians had any integrity, this would result in serious consequences for the insurance companies.

It’s akin to medical malpractice and potentially fraud. The licenses of the doctors involved should be revoked, and there should be hefty fines for the companies.

Similar to how anti-money laundering/terror financing rules work, the higher ups in the companies should be facing prison sentences in severe cases.

 

[Mij]

(Also this person had terrible bedside manners, after making me do exercise testing (I was already severe at this point) we went back into his office and I immediately laid down on the examination bed thingy and he told me “Sit up, I don’t speak to patients laying down”)

My new GP wanted me to come in to assess my walking. I've had ME/CFS for 34 years, and she's not going to collect any data by watching me walk down the hallway. sheesh.

 

[rvallee]

The rejection rate for applications for rehabilitation benefits ("Reha-Geld") stands at an alarming 75%

This is one of the things that make this all so blatantly criminal. The capacity for this treatment model, which doesn't even work, literally does not exist. They do not have enough therapists, clinicians, facilities, time and resources for it. And yet they make it a condition for support, while so many recommend that it be implemented even wider, something that will never happen because it does not benefit from any economies of scale. And they would not be rejecting them at those rates if 1) the treatments worked and 2) the capacity existed to provide them. All of it is fraudulently false.

If 1K people have to be processed, and that is the appropriate word, by those services, and they want to process 2K, they have to not just double all the resources, but actually more than that, because as they'd grow it out they would need more layers of management and bureaucracy.

This is one the things that make me cringe whenever people downplay the importance of drugs as a treatment form. I am even more critical than average of what the pharmaceutical industry is and how it works, but drugs work because they fully benefit from economies of scale. There is no greater efficiency in delivering treatments than being able to package them in a standard form that can be delivered anywhere to anyone where as its production grows, each unit gets cheaper, as it does with time.

The biopsychosocial ideology as the future of medicine means literal bankruptcy. The economics of it are so completely farcical, they are on par with returning to horses and buggies as industrial policy.

And this is a sign of a system that is criminally incompetent:

Legal action against PVA decisions has seen a success rate of 50%, primarily due to the poor quality of the medical assessments

It's not even its true failure rate. A failure rate significantly above 50% warrants not just shutting down all the services that even touch it, but to fire, with extreme prejudice, every single person involved in it, and sue everyone in charge for fraud and criminal endangerment.

Like everything about this illness, it's always worse in context, the more context we add the worse it looks, and there is so much more context hidden away, happening in secret behind closed doors, to assume that things are at least 10x worse than they look, and they already look like an extremist criminal ideology bent on inflicting cruelty for its own sake.

 

[Tal_lula]

Am I remembering rightly that was it you who went thru then saying they didn’t diagnose those with LC with me/cfs ‘because of the figures/not mixing cohorts’ or something? I can’t remember how long has passed between that and this of whether the change is different OT or suddenly they’ve different funding or layout of anything?

Looks like I never replied to this. Yes, that was me and it was the same service. However, when my friend got his clinic letter, the recorded diagnosis was "Post-Covid Fatigue Syndrome", for which a unique diagnostic code doesn't exist.

 

[Kiristar]

I was rethinking about that appointment I had where I got diagnosed with FND and I remembered an interesting detail.

(Note this is significant because the doctor I saw is officially a researcher in the neurological consequences of COVID, helped write the country guidelines for long COVID, and teaches the medical school).

Anyways what I remembered was that he didn’t actually deny my ME/CFS diagnosis. He said CFS is a part/type of FND, and not a very useful one, so I should use the FND label in the future. He then prescibed GET/CBT, and when I mentioned pacing, he told me pacing didn’t mean using a wheelchair like I was, but doing a little bit more each day until you can go back to work.

(Also this person had terrible bedside manners, after making me do exercise testing (I was already severe at this point) we went back into his office and I immediately laid down on the examination bed thingy and he told me “Sit up, I don’t speak to patients laying down”)

This is the usual neurologist perspective I suspect.
In my hunt for answers I saw a neurologist in 2018. He was polite but manipulative. He diagnosed me with FND "on principle" because ME/CFS is a subtype of it, and of course that it is psychological in origin and he pointed me to a psychosomatic FND website for patients. He then told a pack of lies about the consult in my GP write up.

Until then my GP had taken me seriously after my viral meningitis and thereafter I was medically stigmatised. The experience left me with medical trauma and a deep mistrust of physicians. My hubby attends any consults now.

Fortunately I then saw a good POTS specialist and GPs do believe in pots due to visible hr data so that helped bury the neurology letter and the earlier ME/CFS diagnostic and POTS are the two diagnoses that have visibly stuck on my record. Although they (GPS) devoutly believe ME/CFS too is psychosomatic and I continue to be stigmatised by them on that basis of course.

Edit - grammatical clarity of last paragraph.

 

[Sean]

Like everything about this illness, it's always worse in context, the more context we add the worse it looks, and there is so much more context hidden away, happening in secret behind closed doors, to assume that things are at least 10x worse than they look,

Absolutely this.

I think the main motivator for the stubborn denial and delay in properly dealing with this problem is that it is so horrific and obvious and comprehensive a systemic failure, that most simply cannot believe it is true, cannot face what it says about medicine and broader governance, and about themselves personally. So they desperately look for excuses, any excuses, however transparently ludicrous and cruel, to avoid doing so.

And we pay the full price for it, again and again and again...

 

[Mij]

I'm a little surprised that GPs here aren't aware of Long Covid. My dental hygienist is very aware of CFS and Long Covid, and we've discussed it a few times, she also mentioned that they're having difficulty getting diagnosed for either one of them.