Biomedical articles on MEpedia - purposes and pitfalls

I understand this. But for me it's progressive, too, if you end up as a breathing corpse. Or if you commit suicide because it's unbearable after xy years.

"Duden" explains progressive as "gradually increasing, developing".

Edit: If I understood correctly, there are different forms of MS. There is a progessive form, but also a stabilized one. I think it is more correct to surmise the same holds for ME.

 

Am so sorry to hear you have a progressive form of ME, Inara. I agree totally the fact that a minority of sufferers have a more uncommon progressive form should be described in any ME fact sheets but is simply unhelpful and misleading to say ME is a progressive illness as the MEpedia site stated last time I looked. Also, I would disagree that an illness is progressive because you commit suicide. Many people take their own lives whose chronic illness - not just ME - is *not* progressive, they just can't bear it any more. This is not the same thing as having a progressive illness, no matter how tragic the act of suicide.

 

Indeed, it seems from the informal poll its a minority that do not progress instead of the other way round.
And to get the results they wanted in PACE they had to ratchet down the recovery threshold, not keep it static...

 

Of course, thats why i called it informal.
I wish it was not progressive "except for a minority" but starting with the conclusion that its not progressive except some then constantly moving the goalposts to maintain that conclusion is not cutting the mustard.

GET studies in general seem to find patients get worse, even though they have to do statistcal distortions to reach the opposite conclusion. I really wish this was a static condition, i would give almost anything to make it so

 

About the progressive/course of illness question, Stoothoff et al’s 2017 paper (Leonard Jason’s team) is helpful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5710812/ They got 541 ME/CFS patients from DePaul US, Newcastle UK and Norway to rate their illness progression and then classified those responses using the terminology used in MS.

The results were:

I suppose it’s nice to know I’m in good company in the “constantly getting worse” group. [Waves.]

 

This is very interesting.
What kind of timeframe did they study for disease duration?
Also were they able to define patients that said they were fine but had reduced their activity to levels to fit their capabilities, i recall there was discussion or paper on this (does this ring a bell for anyone who can post a reference?)

 

I'm not sure I understand your first question - on average, the participants had an illness duration of 7ish years (it varied between groups, probably not enough to matter), they were in their 40s and had become ill in their mid-late 30s. They didn't follow them over time, they just asked them once.

They looked at whether people reported staying within their energy envelope or not - check out the paper, it's interesting.

 

I see. If i had been asked 10 years ago i would have said i was rather static, the decline was very slow and hard to notice but for much later hindsight (unfortunately), but if you asked me today my last 7 years has been very downhill

I can't read it, i lack the cognitive ability to get through it.

BTW is relapsing/remitting and fluctuating concerning the disease or functioning/crash-PEM cycles?

 

I think the question asked was inappropriate. "Has your ME/CFS progressed from when it began?" I think many people would answer yes to this question, because it's not uncommon to try and push through and then get worse, but not necessarily because the disease is progressive in itself. The more appropriate question would be "Is you ME/CFS getting progressively worse over time?(even with pacing)"

 

There are two additional difficulties here though. The first is that we are talking of the kind of time-frames where getting older is a factor. Certainly it's a factor for me these days. Of course, I wouldn't dream of telling you how old I am now, but when I went down with it aged 49 nearly 20 years ago, I was a different specimen of humanity.

The other is the decline in overall fitness. If, shall we say, ME were to reduce my capabilities to 20% of normal muscular function, then, over time as my muscles diminished, so would my functioning, even though the ME remained at 20%.

You could also add in the time taken to get a diagnosis and to get to grips with the condition as a complicating factor. In the first 2½ years I was utterly wiped out, trying to keep going, and it probably took another couple of years to get back to a stable level.

So although I am worse now than I was 15 years ago, but better than 18 years ago, it could well be that my ME has remained constant at 20%: it's almost impossible to work out for sure.

 

I look at it as a sum of all forces, if people are worse off over time then they have progressed. The mechanism is not well understood, is all progression from overdoing it into PEM, would it progress on its own if patients were diagnosed the day after they got ME/CFS and told to never go into anaerobic activity, do patients have the luxury of never causing PEM, how much did people overdo before being diagnosed or treated with GET, the possibilities are practically infinite and we don't know answers to these questions.
But if its worse from when it began then it has progressed unfortunately. If you can no longer do things you want to do or live the way you would if you didn't have this dreadful condition it doesn't matter how you got to that point.

All that said if researchers find the mechanism and demonstrate all deterioration is caused by PEM episodes then every doctor needs to be educated to find the condition quickly and teach patients that PEM is to be avoided if they don't want to progress. Until a treatment or cure is developed this would be a smart disease treatment, if most patients were kept at a mild stage their lives will be made easier.
Of course the PACErs will fight any legitimate research findings because they are wedded to their lies...

 

Yes, I think this study is a helpful snapshot but to really see how people's illness changes over time, you've got to follow them. At three different timepoints in my illness I would have been in three different categories, but I now know which category I really belong in. And it isn't the one I'd like to be in!

Gotcha. I can read quite a bit, but unfortunately I lack the cognitive ability to post much, hence the delay and limited post length.

From the definitions they gave and the responses they got, relapsing/remitting is really about those people who have quite defined periods of months or years when they are unwell sandwiched by equally defined periods where they are well. So a relapsing/remitting person might have a bout as a teenager, then have 15 years where they're functioning normally (or seem to be), working, socialising etc, and then relapse at 32 and have to stop work.

The fluctuating category is for people whose disease varies in severity but never goes away. So if someone was having "functioning/crash-PEM cycles" as you said, but never had periods where they were truly well, then they would be in this fluctuating category.

 

How does viewing ME as a multi-system disease lead to getting conned by quacks?

 

Well, if a parent reads that ME is not psychosomatic but is a multi system disease I think they are likely to go looking around for doctors who will treat it as such. There are plenty of private doctors happy to provide antivirals, 'immunomodulators', antibiotics, rituximab, supplements, cardioactive drugs etc. which I regard as quackery in the case of ME. These doctors' names come up on forums and I know people follow those names and end up taking all sorts of things. That is a free choice for someone managing their own condition but when children come into the picture it is more worrying.

On the other hand if a parent reads that ME is not psychosomatic but as yet we do not really now what it is, I think they are more likely to be able to accept when an honest doctor says they do not know of any specific treatments, just of ways to help people cope.

I found it interesting that at a meeting of decision makers Vicky Whittemore said she would like to see major centres for ME in the US with units providing different treatments for people - yet at present we do not have any such treatments to provide. Centres for trials, certainly, but first we have to discover something worth trying.

 

Anyone feeling up to edit some of the pages recently cited with regards to the 'CCI-ME' story?

https://www.me-pedia.org/wiki/Craniocervical_instability
https://www.me-pedia.org/wiki/Intracranial_hypertension

Perhaps at least add links to the discussions on S4ME?


Moderator note: This post has been copied, and posts discussing it moved or copied to a new thread:
MEpedia articles on neck surgery for ME (CCI, AAI, chiari, stenosis)

 

I think they should be taken down. We have no good reason to think CCI or intracranial hypertension are relevant to ME/CFS and lots of reasons for thinking they are not. the material on the CCI page comes from the opinion of a small group of surgeons and is not the general view.

There is a specific error on the CCI page suggesting that there may be symptoms from CSF blockage, which might be relevant to intracranial hypotension but not CCI. This confusion is presumably the basis for thinking that the two are somehow similar or connected. They are not.

The whole thing looks to me like garbled disinformation.

 

Everything you say, Dr Edwards, is quite true. And many of the drugs given to ME patients spike up the system, and the person is revved up like Michael Jackson, only to crash horrifically once they try to do a bit more, with the false sense of energy. The problem as you know is that this illness is unsustainable. Many in the medical and scientific field do not quite grasp why it is unsustainable: who can bear non stop flu feeling for years on end, daily, every minute, or constant nausea, and toxic feeling, and sick feeling. It requires the patience of Job. What are the ways of coping really for the severe? what can be done when nothing brings any relief? I am devastated, and in a kind of shock I will never come out of that in our day in the West all these young people have been abandoned. I never imagined this was possible in our time, what with the advances in technology in every area. The folks on this site are most likely moderate, or moderately severe, for someone who is severe cannot do the internet. They lie in their beds, day after day, month after month, year after year. I truly believe that this is not grasped. Yet, Dr Davis grasps this, for he sees it non stop; so do the parents of Tom Camezind, and other parents of the severely ill. What exactly are these parents to do? No, there is no urgency except for those impacted. And the imbecile name of "fatigue" has to be the worst bit of gaslighting I have ever come across. Forgive me for being so upset, but I am truly devastated that the young people have been thus abandoned.

I thank you, of course, for being there and answering questions and contributing so very much, and helping.

 

I wish there were one more category for ME: fluctuating but overall growing worse.

edit: clarified that I wanted the category for ME (not MS, as I don't know if they need this or not)

 

I think it's too soon to edit. Emotions are running high and I have seen all sorts of logical errors in the discussions, even from people who generally have good logic.

I would wait a while until things have settled down, and people have had a chance to process all this.