'Recovery' statistics

(This isn't really "news" but I didn't know where else to put this thread.)

Firstly let me clarify that I am not talking about the bogus 'recovery' statistics that are propagated by the BPS lot.

Rather, I am referring to hearsay that ive heard within the ME community (from people who are not in any way convinced by the BPS rubbish).

I've heard lots of people quote a statistic that "only 5% of people recover from ME". Where is this statistic from? Does it refer to complete recovery or to a certain level of functional improvement? Is it an accurate statistic?

I've also had several ME patients tell me that because I am "young" (I'm 24), I am more likely to recover or at least to experience significant improvement. Again, where is this view coming from?

I'm also interested if there is any information or statistics about whether people tend to improve over time if they pace themselves well.

 

I've nothing to add but am also interested. I suspect the problem with any data will be the definitions of ME in the first place, coupled with the subjective nature of what recovery is to each individual. Will watch with interest though!

 

I believe we had a good thread on this in the past, I'll see if I can dig it out (though working until gone 8pm tonight *sob*). I'll roughly repeat what I think I wrote in that one: this is an area that is fraught with controversy as to what illness people with recovery stories actually had. However, I do fear that we can fall into a tautological trap: ME/CFS is irrecoverable; you recovered; ergo you didn't have ME/CFS.

I've known two people to make a full recovery from an illness that would definitely meet the main criteria to be diagnosed with ME/CFS (Canada/ICC, not just Fukuda). One was as a teenager and the other in their early twenties, ill for 2 years and 5 years respectively. Now, does that mean they have the same condition as 'your ME' or 'my ME'? The only scientific answer is we just don't know.

 

I found a Montoya chu paper quoting a hotopf (UK Psychiatrist) paper which was a review of several other papers and found that 5% recovered “untreated” but said that CBT & GET could help with better outcomes. Abstract here:

https://www.ncbi.nlm.nih.gov/pubmed?Db=pubmed&Cmd=ShowDetailView&TermToSearch=15699087

Although a quick glance of paper which is about adults only I think, which alone would create a different stat than if children were included, as typical UK research seems to have a very vague definition and entrance criteria so whether It’s something we should be basing our arguments on is debatable unless there’s other studies ?

 

Hi @Sarah94, @ringding, and @Londinium

Page 1 of the Canadian Consensus Criteria (CCC) Overview says: "In a review study 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.... The prognosis for children and youth is much better":https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf (references quoted are on pages 19 and 20 - the prognosis study is reference #7)


Interesting, the systematic study the CCC Overview quotes is this 1997 one:

https://www.ncbi.nlm.nih.gov/pubmed/9093600



The entire CCC is here:

https://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf


I found this 2005 study which supports GET/CBT:

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

Hope these help!

ETA: both the 1997 and the 2005 prognosis reviews note belief in ME as a physical illness inhibits recovery. (Of course, we know there is incontrovertible proof ME is a physical disease.)

ETA #2: The MEAction 2019 research summary: http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf

 

@DokaGirl thanks! Some reading to do there.

 

from the CMO report in 2002

http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf

 

@ringding, you are most welcome!

I knew someone in the youth age range, which I believe is approximately 18 to 25 years of age, who was very ill with a diagnosed case of cfs - bedridden for about 2 years, whom I was told recovered very well.

 

If only I was in that age bracket! Add on 20yrs and I would just squeak inside the top bracket.

 

I think that figure of 5% comes from the review by Cairns & Hotopf on the prognosis in ME/CFS. It almost 15 years old (and the data in it even older) but it seems to be the best estimate we've got. Most of the data in the review come from relatively short follow-up studies that didn't define recovery in detail, so lots of problems.

I'm afraid we don't have good data for this either. Leonard Jason did some studies that suggest that patient do better if their energy quotient is in balance (see https://me-pedia.org/wiki/Energy_Envelope_Theory), but that's just about it.

 

[I originally posted this elsewhere a couple of years ago.]

At a lecture he gave in December 2015, Dr. Bell was adamant that 5% of his patients do recover. He was clear that these cases were no different from the other cases he had studied. He had no explanation for their recovery.
- - -

 

Do we have anything that suggests that they simply didn't decide that seeing him was a waste of money, or effort, so didn't go back and are, in the absence of a death certificate, presumed 'recovered'?

 

I doubt it. It's hard to imagine Dr. Bell, noticing that a patient had stopped coming to him, would then, without contacting them, pour over that patient's records to try to see why they had "recovered." He was the only doctor in a town of 800 people. Many of his CFS patients were children.

 

I think that dr Bell has published other figures suggesting good rates of improvement or was that children ? I’m never sure whether the most improve is an observation of expert drs who might manage their patients very well versus the average NHS patient who might have Been harmed before they even learn how to manage the illness and have the “good outcome” chances lowered.

 

In a small community during an epidemic the chances are that Dr Bell saw patients early in the illness whereas many people wait for years before seeing a doctor and then get the wrong advice. It is often only when they get bad that they discover the ME community and begin the things which help us.

His patients knew they were ill and were probably allowed to be ill so they did not overexert too much.

Nigel Speight said in a video that the children he managed to get treated properly improved.

It may be as simple as children are more likely to get better because they have parents who let them rest.

 

Some cancers spontaneously disappear. Rare, but it happens. I think it's fine not to have an explanation, there isn't always one that we can figure out yet, even in areas that receive 10,000x more research funding.

 

The PACE trial had 641 patients, and, over the course of a year, from what we can see from the data released, no-one actually fully recovered in the sense that you or I would understand. The FINE trial was similar.

The question is what the 5% figure actually represents. Presumably it means 5% of those diagnosed with ME recover in their lifetime. So, given that you can get ME as a child or in your sixties, and assuming an expected lifespan of 80 years, let's assume a potential length of illness of 45 years. That would boil down to each of us having a 0.1% chance each year of recovering, which would be consistent with the PACE results.

I have often heard the comment that young people have a better chance of recovery, but against this I would offer three observations. The first is that diagnosis of ME is unreliable, and the quality of "ME specialists" is highly variable: the second is that youngsters going through puberty must be even more difficult to diagnose, and yet they "only" have to have had the symptoms for 3 months rather than 6 to trigger such a diagnosis: the third is that I suspect historic diagnosis of ME could be more unreliable.

The problem is, of course, that strictly you would have to wait until everyone in the sample had lived their full life to see how many recovered. I don't really understand how they come up with the figure.

I'd love someone to find out that I'm wrong on this, and that the chances are so much better.

 

There may be a 92% chance of full recovery, of absolutely no symptoms that aren't common for the general population in a similar age group and state of health, within 6 months of death occurring.

It may even be 97%, getting people to fill in questionnaires is difficult after such a recovery, so some estimates have had to be used.

Beyond this, as a matter of official policy, we don't have the data to make predictions pre-death, as policy is not to collect such data, as it might embarrass someone in office.

 

Agree. Many important points. I guess many of us are familiar with the statements on low numbers of recovery among adults and the better prognosis for young patients, the numbers of Bell and guess I’ve also read something on this from L Jason. Would be be nice to see a study first defining recovery, then actual recovery rates, but guess such study would be hard to do.

When it comes to youngsters with ME (correctly diagnosed), the situation is probably as bad as it is for others, but I think its fair to think that children/young more often are caught early on, then probably having slightly better chance of getting it right (proper rest early on). If so, there must be a better chance of recovery compared to the common scenario of (young) adults just «carrying on and pushing trough» for much too long. It should not be controversial, rather common general medical sense, to claim that if doing things right early on, the chance of recovery is better than if you do the opposite. This would require that one agrees to the «crazy» idea that proper rest early on actually is a good advice. Overall I guess there is a slightly better chance of limiting damage for children/young, and that this would correspond with progression/recovery.

 

A little-know study on Chronic Fatigue Syndrome (Crowborough Criteria) discovered 100% recovery after full immersion in semi-solid dihydrogen oxide. Objective tests were used, and patients' abilities to leap from the baths, with explosive vocalization was compared with that of healthy humans (a fully random, gender matched selection from a local setting of residents in warden-assisted housing), showed no significant difference. Follow-up investigation was carried out six months later, and no patient felt the need for further treatment. The lead researcher, Dr. Tess Tresults, said, "This trial completely demonstrates that there is hope for CFS patients, and for flaky researchers who can't find employment in proper studies."