Discussion in 'Latest ME/CFS Research' started by Dolphin, Jun 30, 2012.
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Dolphin and I have been twittering at each other about this one until I felt like the discussion needed more room.
In my personal experience (limited), people who claim to have "recovered" from CFS, when pressed, often will admit that they in fact have never *really* felt fully healthy again, still have to be careful with their energy expenditure, etc. Nobody really knows why people with ME/CFS remit and relapse, although in many cases we think we know what the trigger is. (And I'd add that the stigma we experience is enough for people who have remitted fairly well to be extra eager to declare themselves "recovered.")
We also don't know, as Dolphin pointed out, how many of the 'healthy controls' might have had CFS in some form previous to the period of study. Out of a group of 25 controls, I don't think the odds favor that, unless we posit that there is a lot of 'hidden' ME/CFS out there, at a subclinical level. That's possible, but I'm not sure you could ever really detect 'hidden' ME/CFS by symptoms alone, because the symptoms would be at a low level and could be caused by other conditions.
(It would be *very* interesting to know if there are people who are "pre-ME/CFS", in the manner of "pre-diabetes", and whether measures can be taken to help prevent those people from falling severely ill. Of course, that's dreaming far ahead into a future of excellent biomarkers.)
You could also posit that the neurological/immunological dysfunctions seen in ME/CFS occur in some people transiently or acutely, and then self-resolve (or seem to). Maybe they occur in a large number of people as a post-infectious syndrome, but they're mistaken for part of a normal recovery process. If unbeknownst to us, people are passing through that state transiently, it would by definition not be ME/CFS because it would not be chronic - it would be a passing illness rather than a chronic disease state. (If I had a dollar for every person who's said to me "Oh, I had chronic fatigue syndrome really bad once! It lasted for WEEKS!")
No fair... I was reassured about returning to pre-morbid levels of functioning! It was a sophisticated attempt to manage the psychosocial setting of my illness... and now you mean to tell me it was just quackery? What bastards.
Prohealth has a pretty good summary of this study up now:
I have to admit I'm a little baffled at what exactly "no longer has the diagnosis" means. Does a doctor officially make an "un-diagnosis" (i.e. pronounce you cured), or is it based on your own opinion of your level of function, or ---?
Inquiring minds also want to know what definition of CFS was used. And of course you would have to be very careful to apply the same definition to the study participants now, and to the symptoms they experienced at diagnosis and during the course of their illness. Neither the abstract or Prohealth's summary mentions this.
I assume "no longer has the diagnoses" would mean not meeting ALL the diagnostic criteria no more (eg not enough symtpoms.
The thing is.. I personally think that if one learns to manage the illness way with very good pacing and not over exerting.. many then would no longer meet the diagnostic criteria.. due to not causing crashing and hence less symptoms happening.
(If Im able to pace very very well eg not do a thing and lay about all day!!.. I stop causing crashing and hence many less symptoms happen.. the only thing which remains if I keep my activity levels very very low is my sleep issue, food issues and IBS.
David Bell is involved so I am assuming that he is talking about the same group of patients he spoke about during the Invest in ME conference. This was a group of his original patients from the Lydonville outbreak in the 80's.
At the invest in ME conference Dr Bell said that when he spoke to these old patients some of them described themselves as recovered. He then examined what they meant as self described recovered and found that they had not been able to get back to previous levels of functioning.
From the talk he gave I would guess that Dr Bell is looking at his patients preceptions of recovered and what it means to them. He is trying to find some way of measuring this. Dr Bell seems struck by how much his old patients were having to adjust their lifestyles to remain "recovered" and he doesn't think that they are really recovered due to this.
My guess is that this will be a work in progress as he continues to examine these old patients. Maybe if he could get funding he could come up with objective tests and measures.
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An interesting study, particularly as there is so little data on long-term prognosis. The authors collected a huge amount of valuable data to compare healthy controls with CFS patients and those in 'remittance' from CFS.
The key finding is that:
which I'm sure is true for many patients, but there are some important qualifiers to this research, as the authors pointed out. The group in 'remittance' may not be representative of 'recovery' amongst all the original patients, and so those in remittamnce may be in better shape than some of the findings suggest.
How representative is the 'Remit' group?
Of the initial 60 patients diagnosed:
Contacting adolescents 25 years on can't be easy, and those that made good recoveries were probably far less likely to stay in touch. So the 'remit' group may overstate the ill-health of people who say they have recovered.
A similar problem occurs where "in using self-reported CFS diagnoses it is possible that some participants remained ill but did not maintain a diagnosis because of a lack of access to healthcare or uncertainty about their diagnosis". Again, this could artificially depress the scores for the 'remit' group if a few real CFS cases were included.
ex-CFS patients closer to healthy controls than to current CFS patients
The study found that ex-CFS patients scored below healthy controls in 21 of 23 outcome measures. Partly this could be down to the selection issues discussed above, and it's not clear to what extent the authors corrected for multiple comparisons. Just looking at mean/median scores, it appears that ex-CFS patients are generally closer to healthy controls than to current CFS patients
Median SF-36 scores (0-100)
Physical Function: CFS=30 vs 87.5 (Remit); [100 (healthy controls)]
Role Physical: CFS=14 vs 71 
Social Functioning: CFS=42 vs 87* 
General Health: CFS=22 vs 65 
Fatigue: CFS=8 vs 3* 
Memory/concentration: CFS=6 vs 3* 
PEM: CFS=7 vs 4* [0.5]
Overall (0-90): CFS=64 vs 30 [6.5]
Full Time Employment: CFS=20% vs 75% [90%]
note: * means NOT significantly different from CFS; this may be influenced by small sample sizes.
It would be interesting to know the spread of scores ie did the 'remit' group include a chunk of people with healthy scores and a chunk with very low scores?
One other point:
No definitive CFS diagnosis either originally or now
None of the patients ever received a formal CFS diagnosis as CFS hadn't been defined when these patients got ill in 1984-7; they were however diagnosed according to similar criteria (Bell, D. S., & Bell, K. M. (1988). [Letter]. Annals of Internal Medicine, 109, 167.). Likewise, none were formally diagnosed at this new assessment, instead the study used self-reported diagnosis.
All were patients adolescents when they were first diagnosed, as part of a 'cluster' in New York (Lyndonville outbreak, judging by ukxmrv's comments).
If it's true that these patients were mostly adolescents when first diagnosed, I think they have a higher chance of remittance/recovery. I was told that the younger one is when contracting the disease the more likely one is to recover from it.
Does anyone else agree with this assessment?
After 10 years in bed with post-viral onset ME, complete with PEM, I gradually improved and, for ten years, considered myself completely recovered with the sole exception that I would get what seemed to be intense, short-term viral illnesses (bedbound for maybe a day, sore ears, nose & throat, malaise) every two or three weeks. I thought that although my ME was over, it had left me susceptible to viral illnesses.
I consulted a series of GPs (as I moved areas), presenting them with my 20 or so illnesses a year, and they all assured me that some people just catch a lot of stuff and that this wasn''t ME and that I shouldn't be worried about my ME coming back.
Eventually, these short episodes got worse and longer and more frequent and eventually joined up into one big relapse which has lasted over five years now - I'm now housebound and mostly bedbound.
I realise that what I (and my doctors) thought was recovery was actually partial remission. I didn't have PEM and 70% of the time had no symptoms at all - I was even able to go to the gym. I didn't fit the diagnostic criteria for ME.
I wonder if some people considering themselves recovered for ME are also impaired but wouldn't fit the diagnostic criteria.
My experience is almost identical to Sasha's
So wait -- they actually based the status "no longer has the CFS diagnosis" on people's self-report?? What the what now?
It is my sense (as I mentioned above) that people who are in remission at the moment of asking may be over-eager to report themselves "recovered," for a variety of reasons. Of course, it is also possible that some people have a bias in the other direction and report themselves as worse off than they really are; I can think of several reasons why this might happen.
There is no way to correct for either of these biases without *some* objective means of determining level of function - in lieu of the biomarker we don't yet have. But with such a small sample size, even slapping an accelerometer on all these people still won't get you great data.
You're right about the limitations to the study, but it's still precious data given how little evidence there is on long-term prognosis.
Um, I really have to wonder about this study. For one thing, haven't these doctors seen thousands of
patients by now ? So why such a small number group in this study ?
And we know just from reading this board, we vary greatly in functionality. How sick were these patients and when did
they recover ? What tests proved they had me/cfs and what tests prove they don't qualify now ?
I've been completely disabled with me/cfs since 1990, I was 34, and I now have lung scarring, paget's disease, celiac
disease / increased gluten antibodies on stool tests still, kidney stones, etc. etc.
Unless my doctors forgot to tell me, lol, I didn't have any of these in the first 15 years of me/cfs. Aren't other long
timers experiencing the same problems ?
Tc .. X
Judging from Dr Bells talk at Invest in ME I'm guessing that he is concentrating on his original group of patients from the epidemic outbreak. He's not intending this to be a study of any other group of CFS patients so this may not be represenative of any other group.
He can't go back and create data because no one else followed these patients. At the time no one tested them in an extensive way or followed their progress apart from what he tried to do. Obviously the CDC should have done so when they knew about the 80's epidemics but we all know what happened there.
There are going to be high limitations on following these old timers because unless they saw someone like Dr Bell, or Cheney or Peterson and then kept in touch, they may moved on and be better/worse and we just don't know.
What I'd like to see happen is for Dr Bells patients and any other groups of epidemic survivors we have left finally getting studied in a serious way. He's going to need money to do this and my hope is that publishing this basic and limited study someone will fund him.
I wouldn't just look at the epidemics because the medical profession has been looking at those
who get cfs as having a psych problem. As sick as I was, constant uris and uris + muscles in spasm, etc etc,
I ran into this from the local idiot doctors.
Not to mention I wouldn't doubt that cover ups take place. I was working in an environment where I
could've been exposed to toxic fumes or anything the military brought in the door. Lyme is the
perfect example of how cover ups work.
These cfs doctors have long term patients because they're the ones signing people out on disability for
me/cfs. Tracking would be easy. Just look at our medical records. My records show my progression.
Tc .. X
You picked me up slightly incorrectly (which is easy to do with short Twitter messages). I was referring more to other healthy controls/population samples. My initial point was that expecting a test to be 100% specific to ME/CFS may be setting the bar too high in that as you mention, based on this study, there are likely to be people out there who might have had some sort of ME/CFS condition and now be in a post-ME/CFS state where they might be picked up in healthy samples.
So I had more biological studies in mind but it could apply to any studies I suppose.
With regard to this study, there are only 10 healthy controls. They have a mean SF-36 physical functioning score of 98 so it may not be such an issue with this group.
Also, in case anyone missed it, underneath it says:
Dr. David Bell (in 2010) described a non-recovered "recovered" ME/CFS case (from this study) http://www.davidsbell.com/LynNewsV7N1.htm (go down to: "ME/CFS Essay: Fatigue with and without Orthostatic Intolerance")
There is also this same issue for some people when they get the illness. I didnt have PEM with exercise at the start of this illness... PEM was only noticable after almost a year. I had all the viral symptoms but no exercised induced PEM.
thou obviously some are missing being diagnosed due to not meeting criteria..even so i personally want quite strict criteria for ME. It is only then that biomarkers are more likely to be found..so everyone with this illness can then be picked up. Till then, there are going to be people not getting a right diagnoses.
(doctors blamed viruses for my first year of what I know now was ME). Like yourself, the episodes got more and more common and longer and longer.. till I was permanently sick and bedridden ..
Due to my ME history..i call myself a sudden gradual onset as when a bout hit me..it was badly (sending me to bed) and suddenly but things didnt became consistant till over time. I dont know if I had a reactivating virus in which ended up triggering ME.. or if those viral symptoms were on and off ME.
If you are dead you will no longer be classified as having CFS.
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