Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

There are some very vehement comments after the article criticising Jonathan Edwards essay on what I think are inaccurate grounds, particularly those who think only those with a very specific Ramsay diagnosis are allowed to use the term ME, and accuse JE of ignorance. I finally got around to posting a comment. Good to see a few others have too.
 
The comments are a bit spicy but I'm glad to see people express their views directly.

One of the main points of contention is subgroups (or some are saying totally different conditions) but I tend to think that by studying severe patients and/or large numbers of patients (e.g. biobank), the signal(s) will come through despite 'impure' sampling - when we manage to look in the right place.
 
James Morris-Lent said:
The comments are a bit spicy but I'm glad to see people express their views directly.

One of the main points of contention is subgroups (or some are saying totally different conditions) but I tend to think that by studying severe patients and/or large numbers of patients (e.g. biobank), the signal(s) will come through despite 'impure' sampling - when we manage to look in the right place.
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It didn't seem like subgroups to me - more that CFS is not ME.
 
Those who have had Neuroimaging via SPECT Scans showing irreparable damage from Encephalomyelitis should be given the diagnosis of Myalgic Encephalomyelitis because that is what we have. My SPECT Scans showed lesions and damage to my occipital lobe. This won my lifetime disability pension in 2 separate countries and opened the door to treatment to reduce the severity of what is actually an “acquired brain injury”.

I take offence at the insulting way patients with Myalgic Encephalomyelitis are bullied by CFS patients with no knowledge of our personal medical facts and neglected by the medical profession because we are problematic for their arrogant dismissal. This is the exact same tactic that the Authors of PACE used to build their reputations on.
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A portion of the latest comment. That seems worth responding to. I vaguely remember that SPECT scan is another questionable or nonspecific diagnostic test promoted by an elite ME expert. Am I wrong?

As for the second paragraph, I would say the true ME crowd has a tendency to engage in illness denial and superficially authoritative but substanceless talk to dazzle the uninformed. Exactly like the CBT/GET crowd.
 
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strategist said:
A portion of the latest comment. That seems worth responding to. I vaguely remember that SPECT scan is another questionable or nonspecific diagnostic test promoted by an elite ME expert. Am I wrong?
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I think it would be counterproductive to try to engage with comments on Virology blog. The place for rational discussion is here, I think.

The point about brain lesions on imaging is intriguing. I think there is a false argument involved.
As I understand it:

1. The epidemic at the Royal Free, and maybe also in Iceland and elsewhere, was said to include cases of paralysis and also perhaps some cranial nerve lesions.

2. Paralysis occurs in poliomyelitis because of lower motor neurone cell body damage in the cord and is flaccid (floppy).

3. Perhaps because of other neurological findings as well as paralysis at Royal Free it was suggested that it might be due to an infection that produced not just myelitis but encephalitis as well - encephalomyelitis.

4. When encephalitis produces paralysis it is always (long term) a spastic paralysis. As far as I know none of the RF cases had spastic paralysis and nobody with ME since has been found to have spastic paralysis.

5. So the reason for calling ME encephalomyelitis was based on a mistake. It was not based on finding brain lesions on scans because there were no scans then. It was based on an inference of brain lesions that in hindsight was not good neurology.

6. So there is no reason to think that brain lesions on scans in any way point to a diagnosis of ME. If anything the presence of brain lesions in someone with clinical ME points to them having some other undiagnosed encephalopathy, not the illness Ramsay reported. The illness Ramsay reported did not include evidence of brain lesions.
 
It would be interesting to know which of the Royal Free cases were the ones which went on to have the protracted illness, and which recovered. Were they among the twenty "serious" cases reported by M and B - or were they from apparently less "florid" cases? Is that reported anywhere? I have not seen it.

It seems telling that M and B reported, in 1970, that one case remained ill for a year. Some detailed research there, then.
 
chrisb said:
It would be interesting to know which of the Royal Free cases were the ones which went on to have the protracted illness, and which recovered. Were they among the twenty "serious" cases reported by M and B - or were they from apparently less "florid" cases? Is that reported anywhere? I have not seen it.

It seems telling that M and B reported, in 1970, that one case remained ill for a year. Some detailed research there, then.
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Behan tracked most of them down and found most though I do not know how many ) had recurrent/ lingering illness for the rest of their lives- it is in the youtube clip from Scottish BBCAlba that is on a different thread
It may be this one ( no mic on work computer and no headphones with me)
 
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