Biomedical articles on MEpedia - purposes and pitfalls

I probably wouldn't call the second replication. It is more an issue of corroboration of a hypothesis. Certainly both are important.

 

That is a good point. Also building upon it will matter, if we prove a disease mechanism for ME/CFS it doesn't help much unless its translated into more knowledge or a treatment.

 

It really doesn’t matter how old MEpedia is, Jennifer, what is important and relevant is accuracy of information. With my lived experience of ME since 1982, and just a quick perusal I can identify that there is overegging of certain theories. I would not in all honesty send a medic to MEpedia at this point to learn more about our illness, I fear the overegging may be off putting and have opposite of desired effect. I think as ME sufferers ourselves we are much more able to separate the wheat from the chaff going through all the entries, but curious medics may just think that we are on shaky ground with assertions that are not true. eg. ME is not always progressive, as the site suggested, and the connection btw ME and MCAD is not well researched.

 

I guess it will tend to be that those most interested in writing up a page on a certain theory will be those who are most enthusiastic about it, and then others will be needed to tone things down. When so many of us are lacking in time and energy there is a concern that the 'toning down' phase might take longer than is ideal. It's probably going to be a learning experience for everyone involved.

 

That makes sense, I do agree, but is still inadvisible to report as common comorbidities things that are not actually proven, or to describe ME as progressive in opening page. It is not usually progressive, only in a horribly severely affected minority, and these are big errors, IMO.

 

Indeed, i'm going to start an informal poll

Edit: done
https://www.s4me.info/threads/has-your-me-cfs-progressed-at-all-since-it-began.5352/

 

My understanding is that the definition of progressive illness is one which progresses inexorably until death with no chance of recovery or improvement. Of course, ME can fluctuate for all of us and also become more severe over years. Often, greater severity is a direct result of having unwittingly overdone it. I don’t believe though this is the same as an illness being progressive and I have never seen ME described as a progressive illness in any literature. If it were generally progressive I expect I would be dead by now, having been ill for 35 years. There are exceptions of course and a minority of pwME that we read about in media become horrendously and unremittingly ill and do eventually die from complications or suicide.

 

ME worsening is not the the same as a progressive illness. A progressive illness will kill you eventually, which is not what usually happens with ME.

Happy to be corrected if the definition of progressive illness is not what I think it is.

 

This is what wikipedia says
https://en.wikipedia.org/wiki/Progressive_disease
It does not have to result in death to be progressive.
I would think that if you get worse even if you stabilize later at a level lower then before the worsening that means it has progressed.

 

I think we need to agree to differ. Worsening is not same as progressing: ME is a fluctuating, relapsing and remitting illness. If it were progressive illness we would all get worse and never have any kind of improvement. I reiterate there are some for whom it is actually progressive in the true sense.

 

If when your recovered from PEM you are as functional as when you first got ME/CFS and can do as much before getting PEM as when you first got it then there would be no progression.
It took me a long time and reading a post on S4ME before i could properly articulate how things worked, years ago i could physically do a fair bit till PEM hit and before PEM i was relatively functional beyond being unable to build muscle and crashing hard. However today i can do less even fully non PEMed till PEM hits. Cognitive is more complicated then my brain can articulate right now but about the same post PEM i can't do much anymore and it takes little to hit the cognitive wall.
That said as i posted in my poll thread about people who have relapsing/remitting ME/CFS that for some people the disease fluctuates up and down so if any down is worse then previous lows or longer lasting or more frequent then that would suggest a yes for progression.

My PEM episodes themselves are not as bad as they used to be because i don't push myself till collapse anymore since i now know what disease i have and have been able to structure things for the most part so i don't have to cause such bad PEM episodes. But if i wanted to make myself worse i certainly can push myself into monster PEM by doing only a fraction of what i could do 10 years ago.

 

I don't think any of these terms has a formal definition in medicine. But by conventional progressive is commonly used as a prefix not necessarily to imply death but to imply a uniformly downhill trend rather than an up and down one. The obvious examples are progressive type MS and progressive systemic sclerosis.

 

Thanks, yes, I did not mean to imply that progressive always means death - my
post may have been a bit muddled - but it always means progressive. I think, for example, of dementia and Parkinson’s and motor neuron disease as progressive. ME is not generally progressive, except in a minority. Therefore it is misleading to have it described as a progressive illness on MEpedia.

 

Agreed.

 

Yes, I was wrong to suggest progressive always results in death, but it does always result in ongoing deterioration. ME doesn’t.

I think many of us with ME can often get worse before we stabilise, that seems to be the nature of the illness. And often we get worse because we are fighting the illness, not accepting or knowing its limitations until we learn the hard way. Of course, we can also get worse spontaneously, but the majority of us do tend to stabilise, for better or worse, eventually. People with progressive illness don’t ever stabilise. Again, I am aware of the minority who do progress unrelentingly into worse ME.