Mij
Senior Member (Voting Rights)
She won her appeal, most likely. I think I may have used that term years ago.
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Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)
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She won her appeal, most likely. I think I may have used that term years ago.
The NICE guidelines don’t mention MRIs. There’s a list of basic blood tests and a few things they say shouldn’t be done unless indicated. There’s no mention of alternative diagnoses to rule out. The MEA purple book covers that but not NICE. So it depends on the approach taken by the GP and if they think neurology referral is appropriate.
MSEsperanza
Senior Member (Voting Rights)
I hope it's OK to post here again a preliminary list of achievements in ME research from another thread, written by @Jonathan Edwardsin response to @DokaGirl :
1. Epidemiological studies have shown that there is a consistent cohort of people, independent of geography, who suffer from a well defined clinical syndrome that deserves to be distinguished by the name ME/CFS.
2. Re-analysis of trials of therapist-delivered treatments has established that a psychological model of disease perpetuation is not supported and made very implausible.
3. A population based ME Biobank has been set up and is distributing samples worldwide.
4. Well executed trials have shown that B cell depletion is not a useful treatment.
5. Immunological and microbiological studies have indicated that it is very unlikely that ME causation relates to an NK defect allowing reactivation of, or repeated infection with, viruses.
6. A number of studies indicate that mitochondrial metabolic pathways may be diverted, perhaps involving amino acids, although the exact nature of any shift has not yet been identified.
7. Preliminary genetic screening and epidemiological studies have suggested that there may be a significant heritable aspect to ME. Plans are being developed to set up more powerful genetic screening studies.
8. A number of studies are focusing on the key feature of post exertion malaise and beginning to clarify the physiological changes that can be documented.
1. Epidemiological studies have shown that there is a consistent cohort of people, independent of geography, who suffer from a well defined clinical syndrome that deserves to be distinguished by the name ME/CFS.
2. Re-analysis of trials of therapist-delivered treatments has established that a psychological model of disease perpetuation is not supported and made very implausible.
3. A population based ME Biobank has been set up and is distributing samples worldwide.
4. Well executed trials have shown that B cell depletion is not a useful treatment.
5. Immunological and microbiological studies have indicated that it is very unlikely that ME causation relates to an NK defect allowing reactivation of, or repeated infection with, viruses.
6. A number of studies indicate that mitochondrial metabolic pathways may be diverted, perhaps involving amino acids, although the exact nature of any shift has not yet been identified.
7. Preliminary genetic screening and epidemiological studies have suggested that there may be a significant heritable aspect to ME. Plans are being developed to set up more powerful genetic screening studies.
8. A number of studies are focusing on the key feature of post exertion malaise and beginning to clarify the physiological changes that can be documented.
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Jonathan Edwards
Senior Member (Voting Rights)
Acheson's comment is certainly of interest in that it emphasises the uncertainty around the justification for the name. I think it is also interesting in terms of specific justification:
Although nothing is very explicit here the implication is that it was thought that there was a neurological lesion on the basis of muscle weakness - because electromyography is cited as the relevant investigation. There is no other obvious reason for thinking there is parenchymal damage to the nervous system. Also the thinking would follow an analogy with polio where parenchymal damage to the nervous system is manifest as muscle weakness.
When an electrophysiologist does an electromyogram and says that the cause must be central what they normally mean is that everything looks normal so they think the weakness is due to lack of voluntary effort (coming from the brain). What I think Acheson must be referring to is that electromyography did not show abnormal potentials indicating local muscle damage or denervation potentials indicating lower motor neurone (anterior horn cell) damage.
The problem with this is that the electrophysiologist would normally do a neurological examination first and would exclude a 'central lesion', in the sense of an encephalitic lesion producing weakness, on the basis of tone and reflexes. Central cause and central lesion seem to have been conflated.
I am not sure who in all this history was actually a neurologist. Behan certainly was, but Behan seems to have ended up concluding that the problem was peripheral (not central) in the muscle mitochondria.
Although nothing is very explicit here the implication is that it was thought that there was a neurological lesion on the basis of muscle weakness - because electromyography is cited as the relevant investigation. There is no other obvious reason for thinking there is parenchymal damage to the nervous system. Also the thinking would follow an analogy with polio where parenchymal damage to the nervous system is manifest as muscle weakness.
When an electrophysiologist does an electromyogram and says that the cause must be central what they normally mean is that everything looks normal so they think the weakness is due to lack of voluntary effort (coming from the brain). What I think Acheson must be referring to is that electromyography did not show abnormal potentials indicating local muscle damage or denervation potentials indicating lower motor neurone (anterior horn cell) damage.
The problem with this is that the electrophysiologist would normally do a neurological examination first and would exclude a 'central lesion', in the sense of an encephalitic lesion producing weakness, on the basis of tone and reflexes. Central cause and central lesion seem to have been conflated.
I am not sure who in all this history was actually a neurologist. Behan certainly was, but Behan seems to have ended up concluding that the problem was peripheral (not central) in the muscle mitochondria.
My memory had it that it was Richardson who was responsible for the EMGs-but my memory can be faulty.
Acheson said this
Macrae and Galpine10 were the authors who
first drew attention to a consistent
electromyographic pattern in affected muscles
on voluntary movement, which has
subsequently been confirmed by Richardson42
and Ramsay31
10. Macrae A.D. and Galcine, J.F. Illness
resembling poliomyolitis in nurses. Lancet, 2:
350, 1954.
42. Richardson, A.T. Some aspects of the
Royal Free Hospital epidemic. Ann. Phys.
Med., 3: 81, 1956.
31. Ramsay, A.M. Encephalomyelitis in
Northwest London. An endemic infection
simulating poliomyelitis and hysteria. Lancet,
2: 1196, 1957.
Acheson said this
Macrae and Galpine10 were the authors who
first drew attention to a consistent
electromyographic pattern in affected muscles
on voluntary movement, which has
subsequently been confirmed by Richardson42
and Ramsay31
10. Macrae A.D. and Galcine, J.F. Illness
resembling poliomyolitis in nurses. Lancet, 2:
350, 1954.
42. Richardson, A.T. Some aspects of the
Royal Free Hospital epidemic. Ann. Phys.
Med., 3: 81, 1956.
31. Ramsay, A.M. Encephalomyelitis in
Northwest London. An endemic infection
simulating poliomyelitis and hysteria. Lancet,
2: 1196, 1957.
Incidentally I have always thought that M and B's supposed refutation of the EMG findings so weak as to cast doubt on any scientific credentials they might have claimed. The fact that one of them, presumably McEvedy was able to simulate something vaguely resembling the EMG trace in question is taken by them, and curiously by Thomas, some time later, as proof that the findings were something other than genuine.
Unfortunately M and B give no indication of the manner in which their test was conducted. This interests me. I had one of these tests done in about 1988. I was hooked up to the machine and I think I was told to imagine I was either making a fist, or raising my forearm, I forget which. Initially nothing happened. Eventually there was an audible response from the machine which seemed to indicate approval. By focussing on this it was possible to produce a strong effect.
I am sure that M, knowing what was required, would have eventually been able to produce the result he wanted. That is very different to someone naïve to the process producing that response in proper test conditions.
Unfortunately M and B give no indication of the manner in which their test was conducted. This interests me. I had one of these tests done in about 1988. I was hooked up to the machine and I think I was told to imagine I was either making a fist, or raising my forearm, I forget which. Initially nothing happened. Eventually there was an audible response from the machine which seemed to indicate approval. By focussing on this it was possible to produce a strong effect.
I am sure that M, knowing what was required, would have eventually been able to produce the result he wanted. That is very different to someone naïve to the process producing that response in proper test conditions.
Sly Saint
Senior Member (Voting Rights)
to 'outsiders' I do tend to emphasise that I have ME and not CFS and briefly explain where the name CFS came from and hence why it is not appropriate. But this is really to try and re-educate people about the nature of the illness and correct the vaste amount of misinformation put out by the BPS brigade since CFS was 'introduced' to 'replace' ME.
To me, the use of one name or the other has now become almost symbolic; not that I believe there is a distinction between patients with one diagnosis or the other. Although the conflation with 'chronic fatigue' has undoubtedly created a problem on that score.
To me, the use of one name or the other has now become almost symbolic; not that I believe there is a distinction between patients with one diagnosis or the other. Although the conflation with 'chronic fatigue' has undoubtedly created a problem on that score.
Jonathan Edwards
Senior Member (Voting Rights)
Now that you mention it I remember that Richardson had made claims about specific electromyographic findings. I am pretty sure this is Tony Richardson who worked at the Royal Free as a rheumatologist when I first started and probably did the EMGs. It was common for rheumatologists to do EMGs in those days.
Looking at the Richardson paper it is clear that Richardson himself thought his findings would fit with a myelitis, although not with the anterior horn cell loss of polio. To be honest I don't think his account looks convincingly like any sort of specific lesion and is much more suggestive of a volitional pattern. I think an enormous amount of wishful thinking would have been needed to make this evidence for a 'central lesion' and certainly not an encephalitis.
I don't think we have to suggest that naive patients were involved in trying to produce a particular response, simply that there was some sort of altered pattern of volition that M and B found they could mimic. That altered pattern might just have been related to pain or fatigue. I don't think it requires any very special explanation beyond that.
DigitalDrifter
Senior Member (Voting Rights)
Would that perhaps suggest that these cases were not so different from the current sporadic cases, in which no such evidence is found, as might have been thought?
ArtStu
Established Member (Voting Rights)
I'll counter that by saying in some cases exercise helps some sufferers, it has certainly helped me.
It may well help some sufferers, but it would raise fundamental questions as to what they suffered from.
Wonko
Senior Member (Voting Rights)
There is no problem with exercise provided it's appropriate exercise - depending on who and on what basis 'appropriate' is defined.
It is a moving target, for everyone, not just for pwME.
It can vary week by week, day by day or minute by minute.
'Appropriate' is a tricky thing.
I would suspect that for many/most/all pwME the most appropriate amount is some form of negative exercise - a reduction in physical activity.
At least some of the time.
Something that for many is not easy to achieve as there is a bare minimum of activity needed to survive independently.
It is a moving target, for everyone, not just for pwME.
It can vary week by week, day by day or minute by minute.
'Appropriate' is a tricky thing.
I would suspect that for many/most/all pwME the most appropriate amount is some form of negative exercise - a reduction in physical activity.
At least some of the time.
Something that for many is not easy to achieve as there is a bare minimum of activity needed to survive independently.
AliceLily
Senior Member (Voting Rights)
@ArtStu It only helps when you are getting the enormous amount of rest required at the level you are at with the ME. So for a severe sufferer, just a walk to the bathroom is more than enough, or to the mail box if you can. But exertion should always be up to the ME patients discretion and exertion should never be recommended, only rest because rest is what helps a ME patient the most. Rest is the best treatment for slowly improving up a level and this can take years and years.
Patients already know the importance of getting exercise but with ME things are very complicated and only the patient can try to work out how much is too much on any given day in line with what is happening with their ME.
Snow Leopard
Senior Member (Voting Rights)
I've exercised regularly (over a weekly cycle of exercise and rest) for over 5 years and despite testing above average for my age on CPET testing (VO2Peak, peak power), it has had no effect on my overall decline in health, particularly concentration/brain fog.
yes I remember you biked to a gathering I attended!!
And exercise can actually be house work, because you do not have a choice, and it sends you to a crash.
The prescription of the exercise should be as deliberate as trying to dismantle an explosive device. If you don’t know how to do it, you leave it to the experts, and there are very, very few experts out there knowledgeable enough to do so.
The prescription of the exercise should be as deliberate as trying to dismantle an explosive device. If you don’t know how to do it, you leave it to the experts, and there are very, very few experts out there knowledgeable enough to do so.