Definition of recovery in CFS (Bell & Bell, 2010) (inc follow-up of pediatric cohort)

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So the patients who rate themselves as recovered are, as a group, significantly more fatigued and less active than healthy controls. Interesting.
 

Hope123

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Dr. Bell also commented on this in his Newsletter a while back; scroll down for the section about fatigue with and without OI:

http://www.davidsbell.com/

I'm not surprised. So many of us want to feel well that ANY improvement is celebrated (as it should be) but improvement does not equal full recovery or even substantial recovery in my eyes. For younger folks, they also don't have the gauge of what it was like to be "normal" compared to us "older" folks who might have been used to long work weeks, exercising regularly, taking care of family, etc. all at once without feeling sick/ tired at all.
 

RustyJ

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Here is the full article.

Definition of Recovery in Chronic Fatigue Syndrome

Authors: David S. Bell MD, FAAP Associate Clinical Professor of Pediatrics, State University of New York at Buffalo David E. Bell, MPH Department of Medical Anthropology, State University of New York at Buffalo
Key Words: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome; Prognosis

Abstract
The definition of clinical recovery has long been debated in myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS).

Clinically, many persons who have had ME/CFS declare themselves "recovered" or "nearly recovered" while continuing to present for medical care because of ongoing somatic symptoms. In this study ten persons who considered themselves "recovered" or "nearly recovered" were given questionnaires to assess health status and compared to healthy adults.

Half of the "recovered" subjects would be considered ill with CFS based upon the disability requirements of the CDC empiric definition of CFS, and all "recovered" subjects had significant somatic symptoms.

Yet these subjects had all returned to normal in the symptom of orthostatic intolerance so that their daily activity was normal.

Thus the perception of recovery in ME/CFS is related to the ability to sustain upright activity and not related to the degree of somatic symptoms, including fatigue.

Introduction
In 1985, a cluster of ME/CFS occurred in Upstate New York involving 210 persons, 60 of whom were children or adolescents. The cluster was located in a 180 square mile rural region located between (but did not include) Rochester and Buffalo, New York. Based on the symptoms of the first 100 patients, diagnostic criteria were published(1), but with the publication of the Holmes criteria(2), it became clear that this cluster was the same as what was being termed chronic fatigue syndrome.

The children involved in this outbreak were a subject of particular attention. Of interest, the proportion of ill children to adults was similar to that of other community-wide epidemics described previously(3, 4). Because adolescents have lower Epstein-Barr virus (EBV) seropositivity, it was possible to eliminate EBV as the cause of this outbreak(5), a hypothesis prevalent at the time. Seventy-five percent of the children ill in this outbreak met criteria for fibromyalgia syndrome(6).

This cohort of children and adolescents with ME/CFS has now been followed clinically for twenty- five years. Four subjects have developed malignancy, and many have tested positive to the gammaretrovirus XMRV, a subject to be described in detail in subsequent studies. In 1995 a follow-up study was published(7) which demonstrated that 80% of those children and adolescents who became ill in 1985 considered themselves "well". However of those 80%, half were doing well despite ongoing somatic symptoms, while the other half had minimal or no somatic symptoms. Twenty percent of the subjects in that study were very ill and disabled. A full study detailing the current health status will be presented under separate cover. In the course of clinical practice and primary care, many of these persons have stated that they have "recovered" or "nearly recovered". However, they continue to present with symptoms suggestive of ME/CFS. The definition of recovery has been difficult to address because of the non-specificity of the symptoms. Current criteria for the diagnosis of CFS, the CDC empirical case definition(8) has one section that specifies degree of disability based upon the Medical Outcomes Survey Short Form-36(9). It has been noted that patients who report themselves "recovered" or "nearly recovered" may have low scores on this instrument. The present study was undertaken to further examine this aspect of the definition of recovery in CFS. The current study was stimulated by CFS patients who have stated that they are "recovered", yet on clinical evaluation and questionnaire are demonstrated to have persistent symptoms.

Methods - Subjects
Ten adults followed clinically for many years with CFS had stated that they had either "recovered" or "almost recovered." To assess the degree of recovery, questionnaires were administered to assess the current severity of somatic symptoms and orthostatic intolerance. Institutional Review Board approval was obtained through the Medina Memorial Hospital Ethics Committee, and all subjects signed informed consent prior to questionnaire administration. No subject in this study had developed malignancy nor alternative causes for fatigue over the twenty-five years since being diagnosed with ME/CFS. Ten healthy adults also completed the same questionnaires.

Methods - Instruments:
a) Hours of Activity Scale: This scale is a measure of orthostatic intolerance; it asks the subject to estimate the average total number of hours of "upright activity within an average 24 hour day." Healthy subjects consistently describe more than 12 hours of upright activity in a day. Severe CFS patients experience 2 or less hours per day, moderate CFS experience 3 to 7 hours, and mild CFS have 8 to 10 hours of upright activity within a 24 hour period (unpublished observations).

b) Visual Analog Scale of 9 Symptoms. This self-rated severity scale from 0 (no symptom) to 10 (very severe symptom) measures fatigue, sore throat, lymph node pain, headache, muscle pain, joint pain, sleep disturbance, memory and cognitive symptoms, and post-exertional malaise, all common symptoms of ME/CFS.

c) Fisk Fatigue Impact Scale (FIS) (10). This instrument is scored from 0 (no impact) to 4 (severe impact) for each of sixty questions. It is designed to assess the impact that fatigue has on daily activity. The maximum score is 160.

d) Bell Activity Scale (11, 12). This scale combines somatic symptoms with activity restriction. Persons score themselves from 0 (bed bound with very severe symptoms, requiring assistance for daily living) to 100 (full and vigorous activity with no significant symptoms). This is a simple and rapid assessment of ME/CFS severity for use at clinic visits (unpublished observations). A copy of this one page questionnaire is attached as an appendix and may be freely used.

e) Short Form-36 (9). Also called the Rand-36, this thirty-six item questionnaire has extensive use in evaluating general health and health perceptions in CFS(13, 14). It is also used to help determine diagnosis in the most recent CDC empiric criteria (8).

Results

The first question of the MOS-36 is a general rating of health status. All ten subjects in this study rated themselves as either "good" or "very good," confirming the perception that they viewed themselves as either "recovered" or "almost recovered". No subject, other than control subjects, rated themselves as "excellent."

Patients who were "recovered" were quite different from healthy controls in three areas: VAS, Ability Scale and FIS. For the Visual Analog Scale, mean recovered CFS score was 19.8 +/- 14.67 while the mean control subject score was 6.1 +/- 4.63. This mean difference is significant at the 0.05 alpha level (p=0.011). For the FIS, mean recovered score was 22.8 +/- 25.83, and the mean control score was 4 +/- 5.81. This difference is significant with a p-value of 0.038. Mean scores for the Bell Ability scale were 99 +/- 3.16 for recovered and 90 +/-12.47 for controls. This was significant with a p value of 0.040. Scores for the MOS-36 will be presented under separate cover.

However, the two groups did not differ in the hours of activity scale. Recovered CFS subjects had a mean of 14 +/- 1.94 hours of upright activity, while control subjects had 15.5 hrs +/-1.67 hours of upright activity. The average difference of the means proved to be not statistically significant (p=0.080). The data is presented in Table 1.

Discussion
The results of this small study suggest that all of ten persons who, in clinical follow-up had stated they had either "recovered" or "almost recovered" had persistent symptoms on several questionnaires. In fact, if the MOS-36 scores are used as an index of disability as suggested by the CDC empirical case definition(8), five of the ten "recovered" subjects would still meet criteria as having CFS.

Comparing the ten "recovered" subjects to the healthy controls, clear differences were seen in visual analog scores, Bell Ability Scale, and the Fatigue Impact Scale scores. Of these three, the least significant scores were seen in the Ability scale, perhaps because this scale attempts to combine orthostatic intolerance with somatic symptoms.

However, the Hours of Activity Scale scores, a measure of orthostatic intolerance, were the same in the two groups. This implies is that the perception of recovery is based on the symptom of orthostatic intolerance and is independent of somatic symptoms. That is, when persons with CFS improve and reach a point where they can sustain upright activity for more than twelve hours in a day, they perceive themselves as "recovered" or "almost recovered", despite the fact that other somatic symptoms remain. This observation has relevance in the definition of recovery in ME/CFS, an illness that has no clearly defined biologic markers at present. If confirmed in larger studies, it may explain the large discrepancy in recovery rates in studies of ME/CFS. Thus, future studies of the natural history of the illness will need to discriminate between somatic symptoms and overall activity. It may be that after a number of years, persons with ME/CFS adjust to ongoing somatic symptoms. And if they return to normal activities with improvement of orthostatic intolerance, they perceive themselves as "recovered", when in fact only one aspect of their illness has improved. Again, if this is confirmed, it implies that full recovery from ME/CFS is exceedingly rare. One specific concern related to the definition of recovery in ME/CFS is that when people consider themselves recovered, they feel able to donate blood. One "recovered" subject in this study had normal activity but significant somatic symptoms and was a regular blood donor. Recently the gammaretrovirus XMRV has been implicated in persons with CFS(15). While the relationship of XMRV and ME/CFS is still under debate, these findings carry important implications. Furthermore, it should be remembered that only 20% of persons with ME/CFS receive a diagnosis of CFS from their health care provider (16). A further possible implication of the uncertain definition of recovery in ME/CFS is the interpretation of XMRV incidence in the healthy control population. It will be important in the future to inquire if subjects have ever had a CFS-like illness in the past.
 

RustyJ

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I have met a few people who consider themselves fully recovered, yet when I ask them if they are able to do everything they could before they got CFS, they invariably say "no", as supported by the results of the above study.
 

Dolphin

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I have met a few people who consider themselves fully recovered, yet when I ask them if they are able to do everything they could before they got CFS, they invariably say "no", as supported by the results of the above study.
I think this would also apply for some treatment studies e.g. on CBT, where authors claimed the people were recovered or "fully recovered". Although often in these cases, the threshold was quite low and they didn't ask the individuals were they recovered.
 

heapsreal

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I also think when it comes to recovery its hard for us to tell as its been so long since we were 'normal' and a big improvement on our previous condition can seem to feel like we have recovered. And yes from people i have heard who say they have recovered still say they have to be careful. At times when i have had a few months of feeling quite well, i am always hesitant to say im recovered as this illness is so up and down and i can always sense the cfs lingering in the background, if u not what i mean.

cheers!!
 

Dolphin

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If somebody isn't working full-time outside the home, I tend to wonder if they really are recovered. With this illness, symptoms often have to provoked. One can get into a routine of few high intensity activities and not long hours and so not feel that bad. But that's not the same as being recovered.
 

Esther12

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I have met a few people who consider themselves fully recovered, yet when I ask them if they are able to do everything they could before they got CFS, they invariably say "no", as supported by the results of the above study.
That's been my experience too.

It could be that the CBT/GET crew are able to help alter people's percpetions and understanding of their illness in a way thet allows them to do more - but is also a bit crazy. Maybe an insane level of positive thinking does allow some real recovery? Such an approach would rather invalidate studies based upon self-reported symptoms though. I'm not terribly keen on the idea of embracing madness in order to gain some level of recovery either.
 

RustyJ

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That's been my experience too.

It could be that the CBT/GET crew are able to help alter people's percpetions and understanding of their illness in a way thet allows them to do more - but is also a bit crazy. Maybe an insane level of positive thinking does allow some real recovery? Such an approach would rather invalidate studies based upon self-reported symptoms though. I'm not terribly keen on the idea of embracing madness in order to gain some level of recovery either.
I also think it's strange the way these people say they are recovered, almost as if it's a badge of honour. They can't stand back and be objective about their lives. The sad part is they are creating misconceptions about the disease which have directed researchers, public opinion etc away from the truth.

CBT doesn't have to be part of the picture. I think those that have said they have recovered actually believe it - they have made a dramatic improvement, yet they don't realise that the subliminal issues they are still experiencing are part of the original pathology. Knowing what I do about CFS (and XMRV) I would question every sniffle, every sore joint. However most CFS patients, even if they understood they had a biological illness initially, would not have much background info about XMRV or other possibilities.

If CFS is caused by an RV, then it never goes away. This is beyond question. It doesn't really go into remission either. It just keeps on spreading (unless replication is suppressed by ARVs). It may be that the opportunistic viruses go into remission. This is something I don't think a lot of people have grasped. XMRV infected people should be on ARVs for the remainder of their lives.
 

biophile

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Does CBT venture into brainwashing?

Dolphin said:
I think this would also apply for some treatment studies e.g. on CBT, where authors claimed the people were recovered or "fully recovered". Although often in these cases, the threshold was quite low and they didn't ask the individuals were they recovered.
Precisely. To those that assume CFS symptoms are simply "subjective", reports of recovery via subjective questionnaires are probably good enough evidence for the effectiveness of CBT. But the subjective symptoms of CFS influence objective measurements, measurements which we now know are not improving even in the CBT studies that use questionable patient criteria. People who claim to be "recovered" while still substantially impaired have probably been deceived or may be in denial. When does bad science become scientific fraud?

Brainwashing = forcible indoctrination into a new set of attitudes and beliefs. CBT is "indoctrination into a new set of attitudes and beliefs" while making it a requirement to be eligible for state benefits may qualify as being "forcible".

Esther12 said:
It could be that the CBT/GET crew are able to help alter people's percpetions and understanding of their illness in a way thet allows them to do more - but is also a bit crazy. Maybe an insane level of positive thinking does allow some real recovery? Such an approach would rather invalidate studies based upon self-reported symptoms though. I'm not terribly keen on the idea of embracing madness in order to gain some level of recovery either.
In my experience, employing a lot of positive thinking to facilitate recovery can be good for negative thoughts but is a seductive and dangerous illusion for CFS. While I cannot rule out the possibility that CBT has helped some patients "ignore their symptoms" or balance their life in a positive way that is reflected in the subjective questionnaires, there seems to be something very dodgy going on when we look at the methodology of these trials. All this talk about "improvements" and "recoveries" from CBT/GET proponents would be more convincing if there was an actual match of objective measurements and the use of proper CFS criteria which at a bare minimum requires "PEM". They have had roughly 20 years to get this methodology correct, so I have little faith that this will occur and I now wonder if they would be willing to fudge results to save face.
 

Dolphin

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Precisely. To those that assume CFS symptoms are simply "subjective", reports of recovery via subjective questionnaires are probably good enough evidence for the effectiveness of CBT. But the subjective symptoms of CFS influence objective measurements, measurements which we now know are not improving even in the CBT studies that use questionable patient criteria. People who claim to be "recovered" while still substantially impaired have probably been deceived or may be in denial. When does bad science become scientific fraud?
Good point

In my experience, employing a lot of positive thinking to facilitate recovery can be good for negative thoughts but is a seductive and dangerous illusion for CFS. While I cannot rule out the possibility that CBT has helped some patients "ignore their symptoms" or balance their life in a positive way that is reflected in the subjective questionnaires, there seems to be something very dodgy going on when we look at the methodology of these trials. All this talk about "improvements" and "recoveries" from CBT/GET proponents would be more convincing if there was an actual match of objective measurements and the use of proper CFS criteria which at a bare minimum requires "PEM". They have had roughly 20 years to get this methodology correct, so I have little faith that this will occur and I now wonder if they would be willing to fudge results to save face.
With the PACE Trial, when they initially applied for the money, they were using actometers (objective measures of how much activity somebody does) at the start and at the end. This can be seen in the PACE Trial Identifier and Peter White has said this in the comments on the PACE Trial Protocol. However somewhere along the way they dropped the actometers at the end: they are just using them at the start as "predictors". So we won't learn if the people are really doing more in total. And this trial is costing 5 million UK pounds of taxpayers' money.
 

biophile

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With the PACE Trial, when they initially applied for the money, they were using actometers (objective measures of how much activity somebody does) at the start and at the end. This can be seen in the PACE Trial Identifier and Peter White has said this in the comments on the PACE Trial Protocol. However somewhere along the way they dropped the actometers at the end: they are just using them at the start as "predictors". So we won't learn if the people are really doing more in total. And this trial is costing 5 million UK pounds of taxpayers' money.
Yes, a suspicious move if you ask me, whatever excuse they give. I'm almost certain they dropped it after learning about the actometer results in other CBT studies ie no change. They didn't want to be embarrassed during a large expensive trial and will emphasize the "reported" improvements instead.
 

Dolphin

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Yes, a suspicious move if you ask me, whatever excuse they give. I'm almost certain they dropped it after learning about the actometer results in other CBT studies ie no change. They didn't want to be embarrassed during a large expensive trial and will emphasize the "reported" improvements instead.
Yes, those are my thoughts also.
 

xrayspex

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I am glad I found this thread again, I glanced at it the other day and then today I bizarrely received this article out of his attempt at thoughtfulness in the mail from my pc doctor:

Family Practice news (mag)Volume 40, Issue 13, Pages 52-53 (August 2010)
Fibromyalgia: Tailored Tx Proved Successful
BRUCE JANCIN
ROME — A tailored combination of cognitive-behavioral therapy and physical exercise training has achieved the largest treatment benefit ever reported for fibromyalgia in a randomized, placebo-controlled clinical trial.
--------
I can't find online for free the whole article but this link is by same author and related to same info, basically they split fibromyalgia paitents into 2 groups (some Dutch researcher) as "pain avoidant" and "pain persistent" but they find that both patients, altho w/different psyches, end up both having too much pain and exercise problems so they do CBT group and aerobic exercise and get them thinking more positively and both groups rate their pain and mood as better at the end of the course. NEEdless to say I was rattled bigtime getting this article with his note saying he thought I might find it interesting (ugh interesting is not the word)

Sheeeit, well either fibromyalgia people are a different beast than CFS or that dx in my chart needs to go. And I just found out thru a dif doc that I got back my VIP results and I am xmrv+, I did call the other doc to tell him about the RV test results and then I got this article a couple days later, hopefully it was already in the mail before i told him about xmrv+ otherwise this seems like a very bad sign about where he is coming from. i have both CFS and Fm dx over the years but I really don't relate to the FM as don't have the tender points and they don't seem to have the OI problems I do, or whatever it is tht causes me to lie down. I have a neck injury and that is where my pain is and there could be some problem from the CFS or whatever neurologically my pain messages get screwed up and maybe make pain worse in neck than it normally would have been, I dont know if that is FM or CFS. But I think a lot of the docs in mainstream see CFS and FM under the same umbrella, and in some ways it is and some not, it seems to me a lot of FM people can aerobically exercise, I get PEM, and if you tried to put me in that study he sent me I would refuse because I have learned not to push it, but then I guess they would just say I am super neurotic and fearful to not even try......argh, I can't believe this is coming up at this stage, I had thought he was a good doc that understands CFS. I think maybe he was really trying to help too cus he knows I am searching for answers.....but hell I have more endurance from playing with valtrex than I ever got from trying CBT.......

any other studies you think I should send him besides the one in this thread from Dr Bell? That is a good one. Part of me doesnt want to get into the debate, you can never really prove you're not crazy to people who don't get it.