New Video ME/CFS Scandal Explainer

Overall a good video, I've just got a few points to make.

@3:40 - Says muscle fatigueability would become known as PEM but this is not true.I believe what Melvin Ramsay originally witnessed is not the PEM that's described upon patient forums today. Ramsay never spoke of permanent damage from exercise, he gave the impression that patients walk for half a mile and then get muscle fatigue for 4 days.

@11:59 Editor of The Lancet says we're just a small vocal minority - well we are as long as we are grouped in patients with non-deteriorative fatigue, we are just a minority.
 
DigitalDrifter said:
Overall a good video, I've just got a few points to make.

@3:40 - Says muscle fatigueability would become known as PEM but this is not true.I believe what Melvin Ramsay originally witnessed is not the PEM that's described upon patient forums today. Ramsay never spoke of permanent damage from exercise, he gave the impression that patients walk for half a mile and then get muscle fatigue for 4 days.

@11:59 Editor of The Lancet says we're just a small vocal minority - well we are as long as we are grouped in patients with non-deteriorative fatigue, we are just a minority.
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Thanks for the feedback. I was referencing this

‘Arguably, the Ramsay definition requires PEM, given that its definition of muscle fatigability discusses worsened weakness post-exertionally with extended recovery periods.’

https://www.meaction.net/2019/11/14/demystifying-the-diagnostic-criteria/

Becomes might not have been the clearest wording—‘develops into’ would probably have been better. Unfortunately, I can’t edit videos but I’ll keep that in mind for the future.
 
Watched it last night and it's excellent. Amazing work, Adam. It's so hard to imagine how all of this put together makes such little difference that the exact same mistakes are being made all over again with LC. Absolutely baffling. We have been completely vindicated and it's as if none of this happened.

I had only read transcripts before and never heard him talk, but damn does Richard Horton sound like, well, this:
vultouri.jpg
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rvallee said:
Watched it last night and it's excellent. Amazing work, Adam. It's so hard to imagine how all of this put together makes such little difference that the exact same mistakes are being made all over again with LC. Absolutely baffling. We have been completely vindicated and it's as if none of this happened.

I had only read transcripts before and never heard him talk, but damn does Richard Horton sound like, well, this:
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Absolutely baffling and constantly rewarding failure.
 
Thanks for doing this, Adam. There is some excellent content and you’ve done a great job of condensing it down into one digestible video.

Some hopefully constructive comments:

Adam said:
it’s a complex, multisystem disorder with a wide range of symptoms
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While the exact physiology remains unclear, there is a large body of evidence that demonstrates biological abnormalities in multiple systems, such as the nervous system, the immune system, and energy metabolism
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In his Qieos article on the Concept of ME/CFS, @Jonathan Edwards writes: “NICE also describes ME/CFS as a ‘complex, multi-system, chronic medical condition’. ‘Complex’ and ‘multisystem’ are probably not helpful. ‘Complex’ tends to tacitly imply unspecified psychological factors, which just obscures things (and was not intended). Without known pathology, ‘multisystem’ is unwarranted. Despite frequent claims of metabolic or immunological changes nothing consistent has been found that would explain the clinical presentation.”

I think we are more likely to convince disinterested scientists and medics by taking heed of Jo’s views on this.

ME was recognised as a neurological disease by the World Health Organisation in 1969
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To me, “recognised” implies that the classification is correct. I would have said was classified.

The World Health Organisation (WHO) classifies ME as a distinct neurological disease. This classification remains valid today, and is important because it underscores that ME is not a psychological illness
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I think the validity of the neurological classification can be legitimately questioned. The valid arguments that it is not a psychological condition are not dependent of its classification by WHO.

There are a couple of other bits that I was going to comment on but I’m out of gas for now. I hope this feedback is useful, even though it’s too late to change anything.

Thanks again for doing this, Adam.
 
Robert 1973 said:
Thanks for doing this, Adam. There is some excellent content and you’ve done a great job of condensing it down into one digestible video.

Some hopefully constructive comments:





In his Qieos article on the Concept of ME/CFS, @Jonathan Edwards writes: “NICE also describes ME/CFS as a ‘complex, multi-system, chronic medical condition’. ‘Complex’ and ‘multisystem’ are probably not helpful. ‘Complex’ tends to tacitly imply unspecified psychological factors, which just obscures things (and was not intended). Without known pathology, ‘multisystem’ is unwarranted. Despite frequent claims of metabolic or immunological changes nothing consistent has been found that would explain the clinical presentation.”

I think we are more likely to convince disinterested scientists and medics by taking heed of Jo’s views on this.



To me, “recognised” implies that the classification is correct. I would have said was classified.



I think the validity of the neurological classification can be legitimately questioned. The valid arguments that it is not a psychological condition are not dependent of its classification by WHO.

There are a couple of other bits that I was going to comment on but I’m out of gas for now. I hope this feedback is useful, even though it’s too late to change anything.

Thanks again for doing this, Adam.
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Thanks for the feedback. I hadn’t read Jo’s piece, but I’ll take the points on board for future work. Maybe I could message you before I publish my next video to get your input?
 
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Robert 1973 said:
I think the validity of the neurological classification can be legitimately questioned. The valid arguments that it is not a psychological condition are not dependent of its classification by WHO.

There are a couple of other bits that I was going to comment on but I’m out of gas for now. I hope this feedback is useful, even though it’s too late to change anything.
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Yes, a very well-presented video. I'd add a few more - hopefully constructive - comments to the ones Robert made (which I also agree with):

(a) the WHO classification is a bit of a red herring; we really don't know whether ME/CFS is neurological or not but in any event the classification, made so long ago, must have applied more to the disease that Ramsay originally thought he found rather than ME/CFS as it is understood today. And, in any event, a bureaucratic classification doesn't prove or disprove anything from an academic/medical perspective.

(b) McEvedy & Beard did indeed make a point about the female predominance of the RF cases but that was not the sole basis of their determination and, once again, many of the acute RF cases did not look like ME/CFS as we understand it today (and they were mixed, & at least a small number of them were probably what is now known as FND, as evidenced by the non-anatomically-congruent features). The most salient aspect of the RF incident from our perspective was Ramsay's observation of the long-term aspect of the illness in a few of the cases.

These two matters are very commonly brought up by ME/CFS patients and some sympathetic clinicians but the WHO classification is something of a red herring, and the McE & B story is complex and best avoided.

Otherwise it is an excellent, and thorough, exposition of the history. Thanks so much for your efforts.
 
Nightsong said:
Yes, a very well-presented video. I'd add a few more - hopefully constructive - comments to the ones Robert made (which I also agree with):

(a) the WHO classification is a bit of a red herring; we really don't know whether ME/CFS is neurological or not but in any event the classification, made so long ago, must have applied more to the disease that Ramsay originally thought he found rather than ME/CFS as it is understood today. And, in any event, a bureaucratic classification doesn't prove or disprove anything from an academic/medical perspective.

(b) McEvedy & Beard did indeed make a point about the female predominance of the RF cases but that was not the sole basis of their determination and, once again, many of the acute RF cases did not look like ME/CFS as we understand it today (and they were mixed, & at least a small number of them were probably what is now known as FND, as evidenced by the non-anatomically-congruent features). The most salient aspect of the RF incident from our perspective was Ramsay's observation of the long-term aspect of the illness in a few of the cases.

These two matters are very commonly brought up by ME/CFS patients and some sympathetic clinicians but the WHO classification is something of a red herring, and the McE & B story is complex and best avoided.

Otherwise it is an excellent, and thorough, exposition of the history. Thanks so much for your efforts.
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Thanks, night song. Will take that on board as well.
 
Judging by my husband’s response, this video is right on target @Adam pwme (a few choice word's plus a “I don’t know how you cope” owtte)

I think this hit home for him because statements were backed up with evidence onscreen. The long SW visual was scarily effective. The chronological order and tight script really helped.
 
Robert 1973 said:
Thanks for doing this, Adam. There is some excellent content and you’ve done a great job of condensing it down into one digestible video.

Some hopefully constructive comments:





In his Qieos article on the Concept of ME/CFS, @Jonathan Edwards writes: “NICE also describes ME/CFS as a ‘complex, multi-system, chronic medical condition’. ‘Complex’ and ‘multisystem’ are probably not helpful. ‘Complex’ tends to tacitly imply unspecified psychological factors, which just obscures things (and was not intended). Without known pathology, ‘multisystem’ is unwarranted. Despite frequent claims of metabolic or immunological changes nothing consistent has been found that would explain the clinical presentation.”

I think we are more likely to convince disinterested scientists and medics by taking heed of Jo’s views on this.



To me, “recognised” implies that the classification is correct. I would have said was classified.



I think the validity of the neurological classification can be legitimately questioned. The valid arguments that it is not a psychological condition are not dependent of its classification by WHO.

There are a couple of other bits that I was going to comment on but I’m out of gas for now. I hope this feedback is useful, even though it’s too late to change anything.

Thanks again for doing this, Adam.
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I was half asleep last night, but have checked and for info, here is the reference I used for ME being neurological.

https://meassociation.org.uk/wp-con...L-IS-MECFS-A-NEUROLOGICAL-DISEASE-FEB2020.pdf

It highlights the The UK Government Position

Government ministers have repeatedly made it clear that their departments accept the WHO classification of ME/CFS as being neurological in origin.

In 2010, the office of the UK’s Chief Medical Officer confirmed:

> "The Department’s view is that it is important to recognise that CFS/ME is a genuine and disabling neurological illness and health professionals must recognise it as such."

In 2011, Paul Burstow, Minister for State, Department of Health, said in a debate:

> "There is strong international consensus that CFS/ME is a chronic and disabling neurological illness. I want to stress that it is a neurological illness; it is not a mental health problem."

In a written answer provided in 2013, Minister for Care Services Norman Lamb stated:

> "The World Health Organisation International Classification of Diseases (ICD-10) classifies chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) under neurological disorders at Reference 93.3 and uses the terms post-viral fatigue syndrome (PVS) and benign myalgic encephalomyelitis. The Department accepts this classification and recognises CFS/ME as a neurological condition of unknown origin."

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The 2021 NICE Guideline also refers to the WHO classification of ME as Neurological

This is from the 2021 guideline:

> "The terms myalgic encephalomyelitis (ME; or encephalopathy), chronic fatigue syndrome (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. Myalgic encephalomyelitis is classified under diseases of the nervous system in the SNOMED CT and ICD10 (G93.3). 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."
 
Fizzlou said:
Judging by my husband’s response, this video is right on target @Adam pwme (a few choice word's plus a “I don’t know how you cope” owtte)

I think this hit home for him because statements were backed up with evidence onscreen. The long SW visual was scarily effective. The chronological order and tight script really helped.
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Thanks the letting me know Fizzlou, that’s good to hear
 
Adam pwme said:
Thanks for the feedback. I hadn’t read Jo’s piece, but I’ll take the points on board for future work. Maybe I could message you before I publish my next video to get your input?
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I’d be very happy to help.

Adam pwme said:
as half asleep last night, but have checked and for info, here is the reference I used for ME being neurological.
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It is an unequivocal fact that ME/CFS is classified as neurological. My point is that we don’t know enough about the pathology to know if that classification is correct or not. If we hang “it’s not psychological” arguments on its neurological status, that presents an opportunity for BPS people to cast doubt on the former by highlighting valid uncertainties about the latter.

Here is Jo on whether it’s neurological:
Jonathan Edwards said:
Yes but that example shows why your argument doesn't really work. The reality is that the idea that ME is a neurological disease has been picked up by patients from medical gurus who point out it was classified like that fifty years ago.

Diseases with respiratory symptoms are often not respiratory diseases. The main symptom of left ventricular heart failure is breathlessness, which is also common in severe renal failure. Pain on breathing may indicate a pathological rib fracture from myeloma. And so on.

I am not aware of any symptoms of ME/CFS that are neurological in the sense that they point specifically to a lesion in the nervous system. What would they be? Not fatigue, OI, nausea, gut problems, muscle pain.... Maybe sound and light sensitivity but you can get those with flu - is flu a neurological disease? No.
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As we learnt with debunking PACE, it is important to stick to unequivocal facts. If uncertainties (or inaccuracies) are presented as facts, that gives an opportunity for BPS people to undermine the credibility of valid criticism by attacking straw-men. And SW is expert at that.
 
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