The MEpedia page on Myalgic Encephalomyelitis

This is by far the most important page on MEpedia: https://www.me-pedia.org/wiki/Myalgic_encephalomyelitis

While as always, I highly encourage direct contributions/edits, we should if nothing else get this page right. So I'm very happy to make edits on behalf of folks who really don't have the spoons. If the barrier is technical, we're very happy to talk you through it!

(Someone DM'd me with the idea to create a video to show just how easy it is to edit MEpedia. @JaimeS also had this idea, and it's definitely on our list to tackle this in the coming weeks/months.)

 

I disagree with primary neurological, but my issue is not spoons per se, its about ironically neurological impairment, i can't always explain things the way that i am really trying to and hunting down references is hard for me. Though i will try my best.

That said there are a few things i disagree with, how are we going to handle an edit war if it happens?
I'll try to make my edits later today, i hope i don't spark the war i want to avoid.

 

We need to stick to facts. So we can say that WHO classifies it as neurological, for example. This should never get to be a 'war of opinions'.

 

I agree but PACE classifies it as psychosomatic and we definitely disagree with that. For a long time without an official reason because we didn't know of the malfeasance.
The WHO may not be acting maliciously but the best evidence we have says this is not primarily neurological, pyruvate inhibition is not only in the brain from what i recall of the Fluge/Mella study for example. Neither are the immune findings as far as i understand.
From what i know of the research there are physical and neurological abnormalities found, not just primarily neurological. That said your the better expert on that then i.

 

I think there is pretty good reason to say ME is neurological. Light and sound sensitivity has to be neurological. Brain fog has to be neurological. It is clinically neurological. I think that can be considered a fact. That does not stop it also being endocrine or immunological but we do not know about those.

On the other hand what the WHO classifies it as is a fact about what the WHO classifies it as, but not a fact about ME. The WHO, like all large bureaucratic bodies, should be taken with a pinch of salt. No scientist is going to bother what they classify things as. No doctor cares very much. As an advocacy argument I think it is an own goal to be honest.

My problem with the description I have seen is that it includes 'multi system' and I don't see that we have any real reason to use that term. It does not mean a lot. MS affects lots of systems, like bladder and vision and chest, but doctors would not call it a multi system disease. ME affects all sorts of bits of the body but like MS it might just do so as a neurological disease.

 

I agree, in fact that classification may have a PACE influence we are not aware of

Edit: scratch that, it was decades before PACE was envisioned, my bad.

 

I do agree though that "primarily neurological" is weird only because we can't say, well, it's 51% neurological and 10% immunological or what have you. I'm not sure what it means. I bet there's a better way to indicate that a large number of symptoms probably have a neurological basis without using the word "primarily."

Also @Jonathan Edwards I think when many people say "multi-system disease" they mean there are symptoms emanating from many bodily systems. I think that's true and is different from some conditions where the symptoms are localized to a specific organ or body system. What we don't know is whether this is just a whole lot of noise stemming from a more contained pathology. Do you have suggestions re: language that might hint at the complexity of the presentation without using "multi-system disease?"

 

ME Research UK’s page on “What is ME?” is worth reading:
http://www.meresearch.org.uk/what-is-me/

 

Is there a way to get rid of the captcha, i signed up for an account hoping that would do it but no dice

 

Are you logged in? I never see CAPTCHA when I am.

 

Yes, i just made a change and it asked for it again

 

Grrr...will ask our devs. Not sure why this should happen.

 

Thanks. Its not deal breaking or anything but would be a nice step to skip. Perhaps as the admin you need to approve me or something.

 

don't know if this still applies, but at the other place when Mepedia first started I posted this link to this video on Youtube for those interesting in participating:

https://www.youtube.com/watch?v=F8irbbwNo2E

 

@JenB.
Multi system disease does not have any well-defined meaning but in as much as it does have a meaning to physicians it means pathological change in multiple types of tissue. So diabetes, lupus and rheumatoid arthritis are multi system but MS is not, despite there being symptoms everywhere.

As you know, I play devil's advocate because I want ME advocacy to be effective. For me as an academic physician if an advocate says 'ME is a multi system disease' that is a giveaway that they don't really understand what such terms imply. Being a multi system disease does not make something a more important health problem. MS is as bad as it gets. Schizophrenia is as bad as it gets. Microcephaly from zika is as bad as it gets. None of those are multi-system.

One of my vices is telling tales out of school I guess. But I try only to do it in good faith. At the recent dinner party in London, all names in ME research you can think of were sitting round a table (many of them) together with representatives of government funding bodies from UK and US. There was a lot of talk of 'physical multi-system disease' etc.. What struck both Jo Cambridge and myself was that the US funding representative seemed to buy in to this, along with advocates and charitable representatives from both sides of the Atlantic. But I am pretty sure that the UK funding representatives saw it as window dressing by people who think it sounds good but not something with any real scientific meaning.

In modern natural science everything is ''physical', including malingering and belief in leprechauns. If we want to formulate a clear scientific hypothesis that distinguishes ME from unhelpful illness beliefs we need a different distinction. if you take someone like Jim Baraniuk, who probably understands ME better than anyone on the planet, he is not going to argue about whether or not it is physical. Nor is he likely to think 'multi-system' is helpful. These terms are used by researchers who think they are selling points. What intrigues me is that US authorities seem to be buying in, but, more as I would have expected, UK authorities sit there politely indicating that they are not impressed.

I guess the moral of that is that the best way to advocate for ME may be a subtle matter, depending on where you are. But my approach is to make sure one sees hype for what it is. And particularly if the hype obscures more important issues - like focusing on trying to work out exactly what pathological mechanism would fit the real symptoms of ME rather than the misconceptions about fatigue etc.

I personally see no need to classify ME as anything like neurological or multi system. The terms do not mean anything very useful. The important thing is that it is severely disabling. And the disability seems to have more to do with the brain than anything else. People with severe muscle disease can often carry on a very reasonable life as long as they do not sign on for manual labour. But an chapter on lupus does not start by saying it is a primarily rheumatological disease. There is no point. It details what the disease is like in terms of symptoms and pathology.

 

I love ME Research UK.

 

ME is not always progressive though. It is in an unfortunate, very severely affected minority. I think this should be clarified.

 

The neurologist I saw said my brain might be affected but that didn’t make him classify it as neurological (he wanted psychiatrists to take it on though some years ago now). If 80+% of UK neurologists won’t accept its neurological is that because they are unaware of the brain symptoms and sensitivities or for some other reason? MS is immune, mitochondrial possibly, neurological but has demonstrated neurological damage which is monitored but perhaps oddly the main DMT seems immunological treatment. Isn’t the ME problem the supposedly no structural damage which then leaves it at most considered “functional” in terms of neurology which neurologists are generally hostile to? But then other functional neurological disorders, atypical seizures, movement etc seem purely neurological whereas we have immune symptoms and widespread cellular energy production as core features.

NICE had CFS under neurological and mental health and when it took it out of mental health classification wouldn’t leave it under neurological and few of us have neurologists involved in our care.

The issue with just describing ME as disabling, especially within the CFS context, chosen to NOT suggest either cause or put in the purely physical illness category, is it doesn’t move us away from the harmful past whereby ME was framed as a vague mind body illness, perpetuated largely by beliefs and behaviour.. Wessely and White might well concede its disabling and distressing and have done I think in their literature, that alone has got us left palmed off to psychiatrists and behaviour interventions with few biomedical researchers interested. The whole point AFAICS of something like the IOM report and the “serious, complex chronic multi system disease” label, who tried to not make assumptions about the unproven and controversial causation, was to get us put on the map as a biological illness, requiring biological intervention and all the many areas of research, not just neurological, boosted.

 

I think this is where it is important to decide whether MEpedia is a reference source or a piece of advocacy designed to get a message across. If it is a reference source then 'moving away' from the past is not relevant. The need is to get the facts right in a balanced fashion. If it is advocacy then it is going to be important not to over-egg doubtful claims like 'complex chronic multi system disease'. The BPS people will immediately point that out as an example of unfounded beliefs.

I am not sure that the IOM did anyone any favours by suggesting ME should be 'put on the map as a biological illness'. All illnesses are biological. And whether the treatment is biological or pharmacological or mechanical or whatever has little to do with what category the illness falls under very often.