ME/CFS and permanency

I’m looking for some information around permanency, which is relevant when applying for disability supports. I’ve heard 5 years used as a figure (ie: if you’ve been ill for 5 years, the chances of recovery drop off significantly). Is there any data to back that up? How would permanency be determined in ME/CFS cases? What research would a disability support agency use to support its process for determining permanency in ME/CFS?

 

A couple of studies that could be of interest:

https://www.ncbi.nlm.nih.gov/pubmed/15699087
https://www.ncbi.nlm.nih.gov/pubmed/21401284

 

Thank you both!

 

Do any ME criteria include permanent worsening after exertion as a symptom?

 

I think it was Dr Bell who originally stated back in the 1990s that if someone didn't recover in the first five years then chances were that they wouldn't.

 

I could be wrong, but I seem to recall there being some charts in Dr. Bell's 1995 book "The Doctor's Guide to Chronic Fatigue Syndrome" that related to recovery (improvement) vs. age / sex / length of illness / etc... - or something like that.

Perhaps someone with the book handy could tell.

 

I owned that book many years ago but have long since gotten rid of it.

 

My library had it back about 10 years ago, but it was soft cover and it appears that it either wore out or went missing. I forget who, but a speaker at a recent Stanford symposium held up Dr. Bell's book and called it the best book on ME/CFS. It probably is in the sense of it being from the point of view of the long term observations a clinician who found himself in the middle of an outbreak. It's not full of a lot of unfounded advice, like many of the books I've skimmed through. Bell's book and Osler's Web would probably be at the top of my list.

 

This partially answers the question of recovery : https://www.omf.ngo/2016/08/01/prognosis-of-mecfs/

 

So, not a book, but Dr. Dan Peterson tells Jen Brea about chance of recovery and length of time sick on Unrest.

 

Thanks everyone. This is for a document I’m preparing for a government department, so it needs to be academic sources. Most of these I had already (but post anything else you have!). It shows that there really isn’t much, which is problematic for people trying to claim disability, and who need to be able to demonstrate the likely permanence of their condition.

 

@Simone

This might add some stats:

An Overview of the Canadian Consensus Document (CCC), by Dr. Bruce M. Carruthers, MD, CM, FRCP(C), and Marjorie I. van de Sande, B Ed, Grad Dip Ed, page 1: "ME/CFS can be debilitating. In a review of prognosis, 5 of 6 studies indicated that 0% to 6% (the sixth study indicated 12%) of adults return to their pre-illness level of functioning. Relapses can occur several years after remission."

Interesting... the Overview cites the systematic review: " Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndromes: a systematic review. QJ Med 90:223-233, 1997."


Link to the CCC Overview:

https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

 

Thanks, @DokaGirl. The challenge I have is that most prognosis information is on recovery, not permanency. I’ve already written a brief document for govt on recovery, but now this agency has specifically asked for something on permanency, to help guide them in their assessment. It’s proving to be quite difficult! I’m going to go through David Bell’s stuff with a fine-tooth comb, and see what I can grab.

 

@Simone

Thanks for your reply.

If I come across anything else, I will pass it along.

So, not recovering versus permanency,not sure what the difference would be. Sounds like permanency is considered worse than not recovering?

Confusing; if the recovery rate is only 5 to 6 percent, then 94 to 95 percent don't
recover, wouldn't that indicate permanency?

Might be some info in Melvin Ramsay's and/or Betty Dowsett's work. Dr. Ramsay said ME has a tendency to become chronic. I think that's in his case definition.

Hope more data is out there.

 

One of the links provided by @Esther12 above:
A systematic review describing the prognosis of chronic fatigue syndrome
found that...

(It also claims, in 2005, that there is increasing evidence of the effectiveness of CBT/GET.)

However the full paper, which can seen by clicking on the "pdf" link on the summary page linked above, summarizes 28 different studies in a fairly long table, which might help to find yet other studies - though they'd all be from 2005 or earlier.

 

I guess it’s about trying to predict the likelihood that the person will or won’t recover in the future, with permanency meaning a low chance of recovery. I mean it’s pretty difficult to predict, but people are are having disability support claims rejected because the illness itself has been deemed non-permanent, which the PACE/UK paradigm feeds into. So we need to show that, for many people, the condition is permanent or lifelong. I’ve written a brief one-pager on recovery, including the issues with the literature (subjective outcomes, measuring improvement but classifying it as recovery etc), but now they want something specific to permanency. I’m thinking I will include the recovery data, plus methodological flaws, and am scrounging through David Bell’s stuff hoping to find something I can use!

 

Posted this to see if anyone on Twitter has any good ideas for you @Simone
https://twitter.com/user/status/1103519499079372800

 

A number of posts have been moved from Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

The issue of what a newly diagnosed person should be told about prognosis is covered specifically in this Members Only thread:
The question of “hope”.

Dokagirl said

When I was first diagnosed, after 17 years, I became involved with the local ME community. I asked them why they kept downplaying how long it could last and how serious it could be and they said it was because it could frighten new patients.

A few years later the MEAssociation did and issue of their magazine about severe ME and they were inundated with complaints. An answer to a post I made on an old forum sums it up. A woman said that the only way she could cope with her daughter's ill health was to believe it would go away and that it would not get worse. She accused me of taking away that hope.

I felt at the time that this downplaying of severity and lack of recovery was trivialising ME and was in great contrast to the MS community who then and now have to try to get people realise it is not as severe a disease as the public conception of it.

 

The support group and ME community I joined in the early 90s was quite the opposite. They told me that I would have a life long chronic illness. I didn't have cognitive issues back, but they told me that eventually I would. I stopped going because it wasn't a good fit for me. I had all the positively of becoming well again.