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

[Dx Revision Watch]

I don't understand her motivation for going on about this?

As bolsters for her own papers and articles?

If she was that concerned about the use of the term "Chronic fatigue syndrome" I would have thought she'd have been all over the US ICD-10-CM September proposals - but not a word, that I have seen. According to her, it's sorted in the US because the "good folk" at NIH and CDC are now using "ME/CFS".

 

[JemPD]

Just repeating over and over that post NICE publication, "CFS" is now the domain of the psychs does not make it true.

No, and it risks tremendous harm to the vast majority of ME patients in the UK and elsewhere, who all have CFS on their records, many of us having had some bright spark GP change it from ME to CFS on our records, because they dont like the ME term (no proven brain/spinal inflammation etc) - which is entirely their prerogative since the code is the same!

With friends like that....

 

[Dx Revision Watch]

For those not aware, in an August 2020 BMJ Rapid Response, lecturer in philosophy, Dr Diane O'Leary, included this gem:

https://www.bmj.com/content/370/bmj.m3026/rr-4

“The term “chronic fatigue syndrome” names a psychiatric condition that sometimes develops in reaction to acute viral infection. It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs. By contrast, the term “myalgic encephalomyelitis” or “ME/CFS” names a chronic biomedical disease that typically develops after acute viral infection.”

QED.

I'll pipe down, now.

 

[Barry]

No, and it risks tremendous harm to the vast majority of ME patients in the UK and elsewhere, who all have CFS on their records, many of us having had some bright spark GP change it from ME to CFS on our records, because they dont like the ME term (no proven brain/spinal inflammation etc) - which is entirely their prerogative since the code is the same!

For those not aware, in an August 2020 BMJ Rapid Response, lecturer in philosophy, Dr Diane O'Leary, included this gem:

https://www.bmj.com/content/370/bmj.m3026/rr-4

“The term “chronic fatigue syndrome” names a psychiatric condition that sometimes develops in reaction to acute viral infection. It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs. By contrast, the term “myalgic encephalomyelitis” or “ME/CFS” names a chronic biomedical disease that typically develops after acute viral infection.”

So, in many ways for patients in the UK, their diagnosis was not far from being a toss of the dice. But according to Diane O'Leary, the illness label you ended up with totally categorises what you actually have, and are very different! Is that about the size of it?

 

[Dx Revision Watch]

So, in many ways for patients in the UK, their diagnosis was not far from being a toss of the dice. But according to Diane O'Leary, the illness label you ended up with totally categorises what you actually have, and are very different! Is that about the size of it?

If Dr O'Leary thinks that NICE's decision to use "Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome" and "ME/CFS" for the 2021 guideline instead of "Chronic fatigue syndrome/myalgic encephalomyelitis" and "CFS/ME" (as per the 2007 guideline) will somehow overnight "sort the sheep from the goats" so those who she thinks should be diagnosed with "ME/CFS" are assigned a diagnosis of "ME/CFS" and those with "a psychiatric condition that sometimes develops in reaction to acute viral infection" will be identified in patient records, re-evaluated and assigned a diagnosis of "CFS", then she understand very little about how the NHS operates.

And since whichever of the two terms is applied will continue to generate the same G93.3 code and the same SNOMED CT SCTID Concept code, what are the implications for those whose medical practitioners do not educate themselves around the new NICE guideline recommendations, do not re-evaluate their patients and continue to refer to the disease as "CFS"? But mandatory coding and terminology systems, and care pathways are of no interest to Dr O'Leary.

 

[cfsandmore]

“The committee agree that none of the currently available terms are entirely satisfactory. The rationale for using ME/CFS was initially set out in the scope for the guideline, ‘This guideline scope uses ‘ME/CFS’ but this is not intended to endorse a particular definition of this illness, which has been described using many different names’ and then readdressed in the context section of the guideline, ‘The terms ME, CFS, CFS/ME and ME/CFS have all been used for this condition and are not clearly defined. There is little pathological evidence of brain inflammation, which makes the term 'myalgic encephalomyelitis' problematic. Many people with ME/CFS consider the name 'chronic fatigue syndrome' too broad, simplistic and judgemental. For consistency, the abbreviation ME/CFS is used in this guideline.’ “ pages 113-114
https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-4

My bolding of CFS.

 

[Sly Saint]

There is little pathological evidence of brain inflammation, which makes the term 'myalgic encephalomyelitis' problematic.

this is a common argument against the use of the name but as is now being shown in Covid-19, there is
evidence of damage caused by inflammation in post-mortem brains of covid-19 patients.
"“We were completely surprised. Originally, we expected to see damage that is caused by a lack of oxygen. Instead, we saw multifocal areas of damage that is usually associated with strokes and neuroinflammatory diseases,” said Dr. Nath."

"“So far, our results suggest that the damage we saw may not have been not caused by the SARS-CoV-2 virus directly infecting the brain,” said Dr. Nath. “In the future, we plan to study how COVID-19 harms the brain’s blood vessels and whether that produces some of the short- and long-term symptoms we see in patients.”

https://www.nih.gov/news-events/new...mmation-covid-19-patients-brains-no-infection

So isn't it possible that ME patients have at some time had brain inflammation (possibly at the onset)?

 

[Dx Revision Watch]

this is a common argument against the use of the name but as is now being shown in Covid-19, there is
evidence of damage caused by inflammation in post-mortem brains of covid-19 patients.
"“We were completely surprised. Originally, we expected to see damage that is caused by a lack of oxygen. Instead, we saw multifocal areas of damage that is usually associated with strokes and neuroinflammatory diseases,” said Dr. Nath."

"“So far, our results suggest that the damage we saw may not have been not caused by the SARS-CoV-2 virus directly infecting the brain,” said Dr. Nath. “In the future, we plan to study how COVID-19 harms the brain’s blood vessels and whether that produces some of the short- and long-term symptoms we see in patients.”

https://www.nih.gov/news-events/new...mmation-covid-19-patients-brains-no-infection

So isn't it possible that ME patients have at some time had brain inflammation (possibly at the onset)?

My son had acute onset while ostensibly recovering from a gastric bug, a feature of which had been particularly bad headaches and sensitivity to noise and stimulation. Our then next door neighbour's son had had a very similar gastric bug at the same time, also with severe headaches, but he recovered in a few days and was able to return to school. A receptionist at our local GP practice told us that a gastric bug was doing the rounds for which one of the symptoms being reported by patients was particularly bad headaches. When my son was referred at 4 weeks post onset to a paediatric rapid assessment clinic we heard a nurse on the phone discussing a potential referral for a young lad with a gastric bug followed by severe headaches. I often wonder whether he had caught the same virus that my son had and whether he recovered.

My son's symptoms started so suddenly that it looked similar to a stroke. One minute he was trying to complete some homework with a view to returning to school next day or the day after, the next minute he could barely stand up or write. When seen three or four months later by a paediatric consultant he was given a dx of ME and we were told this still severe 24/7 headache that did not respond to painkillers was possibly due to raised intracranial pressure. We were offered a SPECT scan but that would have meant travelling to Salisbury as our local hospital had no SPECT scanner at that point. We declined, as he could barely cope with being in a car for more than a few minutes. He'd already had an MRI scan which had come back NAD. The 24/7 headache improved a little after 6 months. But the only thing that brought a little relief was to lie on the sofa with his head hanging down. Just walking would exacerbate the thumping headache. 22 years later, he still has a permanent, though not so severe headache and still has hyperacusis, though not as pronounced as it was initially and he can now tolerate bird song.

 

[Inara]

her tweet & insistance in separating the too is really not helpful. as usual

My lawyer pointed out to me that in the "social legal German world" (she is a professional in medical and social law and has specialized on ME, amongst others), including especially judges too, CFS is understood as a psychiatric condition, which can be successfully treated by doing rehabilitation (in a psychosomatic clinic). This comes from UK - Germany follows the "BPS school". In contrast, it can be argued that ME is sth. different that is characterized by PEM and for which there exists no treatment.

So in order not to end up in some psycho clinic (or without financial aid), at least before a German court you should focus on differentiating ME from CFS.

Judges don't care about ICD and the like. They listen to their "experts" which, in this instance, are mostly psychiatrists that say that CFS is psychiatric.

 

[Trish]

Thanks, @Inara, that's interesting to hear what the situation is in Germany.

My concern is the assumption explicit in Diane O'Leary's writings that there are actually exist people who fulfill all of these 4 criteria:

1. They have symptoms of chronic fatigue and some other physical symptoms that fit one or other recognised criteria for CFS
2. Their symptomatology doesn't fit a psychiatric condition such as clinical depression or anxiety disorder
3. The cause of their symptoms is psychosomatic
4. Psychological/behavioural therapy is an effective treatment for this version of CFS.

It is undoubtedly true that there are some people who suffer as yet unexplained chronic fatigue. But Diane O'Leary posits a well defined cohort of people who fit all 4 of the above.

I have seen no evidence that psychosomatic chronic fatigue that can be significantly improved or cured by psychological/behavioural treatment exists.

We have seen by the complete failure of the PACE and FINE trials in the UK, which used the Oxford definition that only required chronic disabling fatigue for at least 6 months, that treatments with CBT failed to show any lasting or objective benefit. If a significant proportion of those patients had this condition Diane O'Leary postulates, there would have been lots of patients recovering. There weren't. So the trial showed not only that number 4 on my list is false, but also showed no evidence to support number 3.

By continuing to publish articles saying this hypothetical condition exists and is treatable and is called CFS, O'Leary is perpetuating a myth. The fact that psychiatrists in Germany are perpetuating the same myth doesn't make it correct or useful.

 

[JemPD]

Very interesting about the situation in Germany Inara,

Judges don't care about ICD and the like. They listen to their "experts" which, in this instance, are mostly psychiatrists that say that CFS is psychiatric.

But in the UK, the 'experts' advising judges would all say they are the same thing.
While there do exist the odd medic who might say that ME is distinct, they are very few & they are seen as 'fringe'. I'd be shocked to my core to discover a psychiatrist in the UK who even recognises that PEM is anything more than an intense version of the natural fatigue & delayed onset muscle pain that any healthy person experiences when they do more activity/exercise than they are used to.

Goodness i'd be shocked if any 'expert' - ie establishment figure & so called expert was prepared to recognise that ME, CFS, & CF were anything other than different names for the same thing.

 

[Dx Revision Watch]

...By continuing to publish articles saying this hypothetical condition exists and is treatable and is called CFS, O'Leary is perpetuating a myth. The fact that psychiatrists in Germany are perpetuating the same myth doesn't make it correct or useful.

I'd be interested to know how O'Leary would rationalise the NCHS/CDC September proposal to revise the structure of the ICD-10-CM G93.3 Tabular List codes from its current structure:

G93.3 Postviral fatigue syndrome

Benign myalgic encephalomyelitis

Excludes1: chronic fatigue syndrome NOS (R53.82)​

to this:

G93.3 Postviral and related fatigue syndromes

Excludes1: chronic fatigue, unspecified (R53.82)
neurasthenia (F48.8)​

G93.31 Postviral fatigue syndrome​

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome

Chronic fatigue syndrome
ME/CFS
Myalgic encephalomyelitis

Index term: Systemic exertion intolerance disease [SEID] G93.32
​

G93.39 Other post infection and related fatigue syndromes​

 

[EzzieD]

Copied post

Although I think it's a key part of why ME is such a neglected disease and we are so stigmatized, I always forget who renamed it to CFS. Do you remember? Does anybody remember?

The name was invented by a panel of American doctors after the outbreak of a mysterious illness in Lake Tahoe in the mid-1980s. The illness may or may not have been ME, it had similar symptoms. They decided to call the outbreak 'Chronic Fatigue Syndrome'. See https://pubmed.ncbi.nlm.nih.gov/2829679/ for the paper about the name choice, and https://me-pedia.org/wiki/Chronic_fatigue_syndrome for more info. One of the doctors in that panel was Dr Anthony Komaroff, who later said he regretted the choice of name: "I think that was a big mistake because the name, in my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It makes it seem unimportant, maybe not even real".

Here in the UK, the name ME got changed to CFS in the mid-1990s by Simon Wessely and his colleagues, to fit their own agenda:



So as a result of all this, a serious disease became trivialised as mere 'fatigue/tiredness' and made into a laughing stock.

 

[Woozy]

moved posts

what about this definition of ME:

 

[Jaybee00]

We already have a bunch of decent definitions of MECFS. I’m not particularly interested in what a Twitter rando has to say. Sorry, but this is not helpful.

 

[EzzieD]

In my own n=1 experience, the only definition that makes sense to me is Ramsay's 1986 definition, which became the go-to definition after I got ME in 1983. This was before ME got reinvented as 'CFS' and it became all about 'fatigue'. https://me-pedia.org/wiki/Ramsay_definition#cite_note-2 . Am thankful ME-pedia still hosts the text, as the old sites it originally came from are now defunct.

But even Ramsay was later forced by powers-that-be to add 'fatigue' as the main symptom in a later version of his definition, which he was not happy about. That's how pervasive the invention of 'CFS' and the subsequent re-invention of ME became, the goal being to wipe out the original biomedical-neurological-sounding definition of ME and make it all about simply general fatigue and 'tiredness'.

 

[Jonathan Edwards]

They cannot be reasoned with - they no more respect ME/CFS than they do ME. They have no limits to their denial of physical reality.

At one level I agree. But I also think that the situation is made much worse by talk of 'ME'. ME is the diagnosis that was supposed to be fictitious, and in the sense that it was linked to an epidemic at the Royal Free I think it was fictitious, but CFS is not. The use of ME/CFS makes it clear that this is a pragmatic clinical category, not some imagined disease that one can believe in or not.

 

[rvallee]

At one level I agree. But I also think that the situation is made much worse by talk of 'ME'. ME is the diagnosis that was supposed to be fictitious, and in the sense that it was linked to an epidemic at the Royal Free I think it was fictitious, but CFS is not. The use of ME/CFS makes it clear that this is a pragmatic clinical category, not some imagined disease that one can believe in or not.

All I can think of here, that a few letters are supposed to make some difference here only heightens my extreme disappointment in our sad species. There's no real difference here, it's all about beliefs and the weirdest-ass politics that humans can muster.

Once I saw this guy on a bridge about to jump. I said, "Don't do it!" He said, "Nobody loves me." I said, "God loves you. Do you believe in God?"

He said, "Yes." I said, "Are you a Christian or a Jew?" He said, "A Christian." I said, "Me, too! Protestant or Catholic?" He said, "Protestant." I said, "Me, too! What franchise?" He said, "Baptist." I said, "Me, too! Northern Baptist or Southern Baptist?" He said, "Northern Baptist." I said, "Me, too! Northern Conservative Baptist or Northern Liberal Baptist?"

He said, "Northern Conservative Baptist." I said, "Me, too! Northern Conservative Baptist Great Lakes Region, or Northern Conservative Baptist Eastern Region?" He said, "Northern Conservative Baptist Great Lakes Region." I said, "Me, too!"

Northern Conservative†Baptist Great Lakes Region Council of 1879, or Northern Conservative Baptist Great Lakes Region Council of 1912?" He said, "Northern Conservative Baptist Great Lakes Region Council of 1912." I said, "Die, heretic!" And I pushed him over.

Dunno if this breaches rules for religious talk but this is a classic joke and it's a really good one.

 

[DigitalDrifter]

In my own n=1 experience, the only definition that makes sense to me is Ramsay's 1986 definition,

The main issue with Ramsay's definition is that it never meant damage from exercise, there was no talk of LTSE. So it leaves a lot of patients like me without a diagnosis that fits them.

 

[EzzieD]

Yikes, this thread having come up again, I see that all the ME-pedia links to Ramsay's 1986 definition mentioned in my previous post, are now all defunct! Luckily, I keep a copy of it, so here it is again. Yes he doesn't explicitly mention PEM, but I remember that not really being a concept yet back then, when I had it in the 1980s. PEM as an entity started to be noticed as an additional issue later on.