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

So is the illness we (or most here) have the same as what Ramsey found, something which overlaps it, or something different but related? I didn’t include ‘entirely different and unrelated’ because of the similarity of several unusual symptoms, specifically worsening for sometimes a long period after attempting normal activity.

 

I think the illness people have now is probably the same as or similar to the long term illness Ramsay described. I think the initial acute epidemic illness with neurological features that are hard to interpret is a red herring other than that it may have been one of lots of infections that can precipitate ME.

 

I would like to think that too.
But it seems that you and I have been wasting our time because none of the people we have been talking to have ME after all. I am not sure what the rational response to that is.

 

It is interesting to hear Behan make the slightly surprising statement that these patients were all completely healthy and yet were fatigued. I presume that by completely heathy he means that they had no neurological signs. We will never know but I think we have assume that there was never any evidence of spastic paralysis and therefore no evidence of encephalitis. Even if paralysis due to encephalitis improves the spastic signs (clonus, brisk reflexes, increased tone, upgoing planters) tend to remain longterm.

 

Slight semantics aside: I find it curious the one respondent keeps referring to having 'won' disability payments. An odd term to use, I thought.

People win the lottery, win a race. I suppose she won the decision granting her disability payments. I find it hard to fathom needing disability payments as a 'win'.

 

Healthy ? I took that to mean that nothing showed up in tests ( surprise surprise). So Standard medical practise healthy.

All had fatigue, sleep issues and other symptoms ( not specified) , which sound familiar.

His wife found mitochondrial abnormalities.

Charles Shepherd was found to have respiration abnormalities - could explain fatiguability ( but only him it seems)

 

Yes, but he would have meant absence of physical signs as well. Assuming he was a diligent neurologist he would not have called someone with upgoing plantar responses 'healthy'.

 

That seems like a way to make sense of all this.

I wonder if, ironically, the clinical picture of the long term effects of the infection would be closer to what today we call ME/CFS than to the kind of "real ME" proposed by certain people.

 

Is it your understanding that encephalitis necessarily involves paralysis. The symptoms given on the NHS website are:

Early symptoms

The first symptoms of encephalitis can be similar to flu, such as:

• a high temperature (fever) of 38C (100.4F) or above
• a headache
• feeling and being sick
• aching muscles and joints

Some people may also have a spotty or blistery rash on their skin.

But these early symptoms don't always appear and sometimes the first signs of encephalitis may be the more serious symptoms listed below.

Serious symptoms
More severe symptoms develop when the brain is affected, such as:

• confusion or disorientation
• drowsiness
• seizures (fits)
• changes in personality and behaviour, such as feeling very agitated
• difficulty speaking
• weakness or loss of movement in some parts of the body
• seeing and hearing things that aren't there (hallucinations)
• loss of sensation in certain parts of the body
• involuntary eye movements, such as side-to-side eye movement
• vision problems
• loss of consciousness

There may also be symptoms of meningitis, such as a severe headache, sensitivity to bright lights, a stiff neck and a spotty rash that doesn't fade when a glass is pressed against it.
https://www.nhs.uk/conditions/encephalitis/symptoms/

 

No, absolutely not.

The point is more subtle: the term 'encephalomyelitis' was used in reference to the Royal Free outbreak because physicians thought that it included paralysis. The disconnect is that if it had indeed been due to encephalitis it would have been a spastic paralysis and even if there was paralysis it wasn't spastic.

 

Oh lord ... I hadn't realised there were such deeply-polarised opinions of who has ME and who has CFS. There is no hard evidence at all so far, so can only be opinions.

 

take offence ... insulting ... bullied ... arrogant ...

hmm.

 

Maybe you have noticed that I'm often upset about this topic. That is why. These people then write letters to for example the NIH with similar messages about CFS not being real, and real ME being defined by the ICC with its list of hundreds of symptoms, and that the cause is enterovirus outbreaks.

 

As there will be some who have not seen Acheson's original description of the naming process in his 1959 paper, it seems reasonable to copy it here:

A further suggestion was made in an editorial
in the Lancet in 1956. It was hoped that the
term “benign myalgic encephalomyelitis”
would emphasize the absent mortality, the
severe muscular pains, the evidence of
parenchymal damage to the nervous system,
and the presumed inflammatory nature of the
disorder. This term has been adopted by
Galpine and Brady32 and Deisher17 in
subsequent articles. It has also been criticized
by Sigurdsson62 and the staff of the Royal Free
Hospital12,27. Sigurdsson objects that the
disease is not always benign, not invariably
myalgic, and possibly never encephalomyelitis.
Benignity is relative; it seems that “benign” is
justified by the fact that there is no other
recorded infective disease of the central
nervous system without mortality. As various
authors have stressed5,8,12, the pain in this
disease, although not invariably present, may
be devastating, and is perhaps the feature
which impresses itself most forcefully on the
observer. As far as the final term is concerned,
the clinical impression that the lesion is central
rather than peripheral is supported by the
electromyogram. In our present state of
ignorance “encephalomyelitis” seems
preferable to “encephalopathy” because it
conveys the suggestion that the disease is
infective in origin, which is almost certainly
the case.

In the Royal Free Hospital report it is pointed
out that the name fails to describe the
involvement of the lymph nodes and liver. As
the author has indicated elsewhere63, a fully
descriptive name such as “benign ameningitic
myalgic lymphoreticular
encephalomyelopathy” if impracticable.
Shelokov et al.15 and Poskanzer et al.16 have
coined the phrase “epidemic neuromyasthenia”.
The first term is misleading because it suggests
that the disorder is confined to epidemics, the
second (translated nerve-muscle-weakness) is
either meaningless or, if it means anything,
suggests a disorder of the muscle end-plate,
which is contrary to the electromyographic
evidence. The verbal similarity with
“neurasthenia” (i.e., psychoneurosis) is
particularly unfortunate.

It is unlikely that an adequate term will be
found until fresh evidence is available. In the
meantime “benign myalgic encephalomyelitis”
may act provisionally as a rallying point in the
current list of medical literature for patients
with the clinical features already described

 

This is why I try to write ME/CFS where possible. It all drives me nuts.

 

It's okay to prefer and use the term ME.

Shouldn't everyone with ME/CFS have a MRI to rule out MS?

 

It can take years from first onset of symptoms to a definitive diagnosis. So you could have a clear MRI, get a diagnosis of ME/CFS and then attribute weird symptoms to that and not get another MRI for several years.

 

I think it was Dr Cheney who said that ME is a common endpoint reached from multiple paths. Makes sense to me.