From the 25% ME Group website - Diagnostic Tests 4 Myalgic Encephalomyelitis

I came across this document on the 25% ME Group website and thought it might be of some use / help / interest to others.

From the 25% ME Group website - Diagnostic Tests 4 Myalgic Encephalomyelitis

https://25megroup.org/download/1796/?v=3159

This is a summary of a highly detailed, sourced text describing measurable organic abnormalities that researchers and specialists have identified in testing of Myalgic Encephalomyelitis patients.

Introduction

For various reasons, many of the articles on Myalgic Encephalomyelitis in the mainstream media (and even some of the medical texts on the illness) unequivocally proclaim not only that there are no tests which can be utilized to help confirm an ME diagnosis, but that despite extensive testing no objective or quantifiable abnormalities have ever been found in any patients with ME whatsoever. Despite their popularity, these are simply absurd claims. The reality is that objective evidence of quantifiable organic abnormalities in Myalgic Encephalomyelitis patients has existed since the 1950’s. Not only are there a series of tests which readily allow an ME diagnosis to be confirmed, but more than 1,000 medical studies have shown a variety of measurable and in some cases extremely severe abnormalities in many different bodily systems of ME patients…

 

I don’t think it’s this simple. They are heavily referring to a few physicians who perform their preferred tests (in the case of SPECT scans, only 1 radiologist can read, in Chile)-

They are referring to scientific publications- some of which have not been replicated, or only have a few patients which is not sufficient for the general world of medicine to trust.

Then, a biomarker usually has high sensitivity and high specificity, which means it can detect nearly all patients with ME and can detect the non-ME patients.

Dr Davis seems to have found one such test, however he is not quote sure what it means yet.

So my answer: it’s complicated.

 

Yes, this is unhelpful disinformation that will confuse people with ME looking for answers.

Few if any of these tests have been confirmed to be valid even as statistical differences between groups of patients and controls. Statistical differences are no use as diagnostic tests unless there is a clear separation between normal range and at least some values in patients.

 

I have seen similar articles in the past, perhaps from the same website. Bizzarely, they often come from people who otherwise have a good knowledge of M.E. I don't know what such articles aim to achieve.

 

Just wondering how many here have what could be described as paralytic muscle weakness?

Does paralytic mean that the person cannot move the respective muscles at all?

 

In the references at the end of this 25% ME Group document, the link for the Hummingbird website maintained by the late Jodi Bassett has been incorrectly given as:

https://www.hfme.or

The "Testing for ME" document on Jodi's site can be downloaded from this page: http://www.hfme.org/testingforme.htm

It says: "Copyright © Jodi Bassett February 2006. This version updated June 2012."

So the Hummingbird site reference is for what is now a pretty old document.

At the beginning of the 25% ME Group's summary text, it states:

I am assume the "highly detailed, source text" for which a summary is being provided by the 25% ME Group is this 2006 (updated 2012) "Testing for ME" article on the Hummingbird site.

 

I note a reference in the 25% ME Group document to:

"GAME" = "Global Advocates 4 Myalgic Encephalomyelitis"

https://artzstudios1.wixsite.com/globaladvocatesmeicc


It is not transparent from the website who is running this "Global Advocates 4 Myalgic Encephalomyelitis" group.

I note that a number of reports and other texts authored or co-authored by me appear on this "WHO" page of the GAME website:

https://artzstudios1.wixsite.com/globaladvocatesmeicc/who


I should like to clarify that I have no connection or affiliation with the GAME group, or with the selection of the WHO, ICD and ICD-11 related documents and texts reproduced on this page, or with the compilation of unattributed content on this page.

 

I think it is arguable as to exactly what muscle paralysis means. It tends to imply complete loss of movement including reflex movement, although in spastic paralysis reflexes are increased. As far as I am aware paralysis is not recognised as part of ME as now understood. There may have been episodes of paralysis during epidemics of acute illnesses that precipitated ME in the past but nobody really knows.

 

This is the frustration of having ME. For over 50 years I have had episodes where I cannot move voluntarily. It is very embarrassing when people notice and I can't tell them that I will be fine, but more usually I can be in a room full of people and no one notices.

A distressing personal report from an Irish sufferer where she describes her ordeal in hospital with this symptom captured my fears.

Yet I have no help from the medical establishment. As the patient, I should not have to decide whether it is spastic paralysis or any other thing and to dismiss it as some sort of FND is based on discredited ideology (freudianism) not science.

Many people with ME have described this over the years who, like me, have it either in a single limb or total but there is not even a name for it and no understanding of what causes it but it was part of ME before CFS was invented and dropped a lot of what we experienced.

 

I think this is a fair point, but my impression is that while it certainly happens in this patient population, it isn't generally considered a core feature. I know several people who do get periodic paralysis, and they have ME, but it's not clear if the ME causes the PP or if it's an associated symptom with another cause.

Moreover, I would want everyone with this symptom to get it checked out and not have it dismissed as 'just part of their ME' (and thus, in a doctor's eyes, something they can't do anything about). E.g., could it be a channelopathy? I fear FND is where many doctors will (wrongly) go, but I think it should be explored in patients if it presents and potentially be seen as a 'red flag'.

 

I suspect that the ignoring of any symptoms of weakness akin to paralysis is due to the dismissal of such cases from the Royal Free, by Thomas in 1990, as "simulated weakness". As authority for this claim he quoted his earlier letter to the Lancet in 1987, which seemed merely to indicate that he concurred with M and B on the subject. He apparently saw no need for corroboration of his opinion by evidence.

 

I think weakness and periodic paralysis are different, though. Mithriel described not being able to tell somebody what's happening because she was paralysed. That's more than weakness.

I think, in the context of Royal Free, 'weakness' is more akin to what Ramsay later called 'rapid muscle fatiguability'. I.e., loss of power in the muscles after effort.

 

I think that it is like almost all the concepts with which we deal. Ideas which seem simple, when subjected to detailed analysis, are not. What is paralysis? Is it an "all or nothing" concept? how do you refer to the gradations of movement disorder in between the extremes? Do they have the same or different causes?

 

Paresis is usually the partial or less severe type; paralysis is where it's more complete or more severe.

 

That's fine, but my point is that we should not place too much significance on the words. They conceal a spectrum of disorder. Unless we query every usage of every term there will be uncertainty.

I have an interest in this because I sometimes used to have to drag my right leg. It wasn't paralysis. It might have been paresis. No-one made a determination. I can well imagine that some Royal Free patients might have had something similar. I don't think weakness is adequately descriptive. I would have welcomed the opportunity of cross examining Thomas upon his use of "simulated or volitional weakness".

 

Apparently, inadequate REM sleep can cause 'waking paralysis' akin to sleep paralysis. That might be a good place to start.

The Australians seem to be looking into calcium channelopathies, too, which is another.

It would probably make sense to do scans on such patients to see if they meet the requirements for a diagnosis of, e.g., MS or whatever.

I would also be inclined to say the scans should be repeated a few years down the line, since anecdotally there's evidence that Parkinson's is more likely to be diagnosed in some with ME.

It would be good to know if, for example, some patients with an ME diagnosis are actually in the early stages of other diseases where the usual clinical identifiers are not yet present, or whether it's just an overlooked secondary symptom that connects to the root cause of the illness.