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Wessley and White at work again

leelaplay

member
Messages
1,576
Press release before publication of story:
Ethnic minorities are 'silent sufferers' of chronic fatigue syndrome

story to be published soon:
Chronic fatigue syndrome in an ethnically diverse population: the influence of psychosocial adversity & physical inactivity
Kamaldeep S Bhui, Sokratis Dinos, Deborah Ashby, James Nazroo, Simon Wessely, and Peter D White
BMC Medicine (in press)

Please name the journal in any story you write. If you are writing for the web, please link to the article. All articles are available free of charge, according to BioMed Central's open access policy.

Article citation and URL available on request at press@biomedcentral.com on the day of publication.
 

Enid

Senior Member
Messages
3,309
Location
UK
Can't say those of us in these parts are what they choose to call "ethnic minorities". Dangerous these Psychos and getting worse. Oh perhaps I should tell them I've three heads a green face and twenty fingers on my left hand - they might have to adjust their "statistics". Seriously - are they running out of things to do.
 
Messages
5,238
Location
Sofa, UK
Oh how they twist and turn...

"Earlier studies, based on attendance at clinics, indicated that CFS is a disease of white, middle class people. Our results show that CFS is more common amongst the physically inactive, those with social difficulties and with poor social support, and ethnic minorities, especially in the Pakistani group studied, and that they are silently suffering."
Or as Private Eye might say...

"Chronic Fatigue Syndrome. An Apology. We wish to apologise for our earlier reports which may have given the impression that chronic fatigue syndrome is a rare psychosomatic condition mainly affecting white, middle class women with an 'all or nothing' approach to life and a tendency to exercise too hard, who then get sick and end up lounging around, complaining loudly, obsessing about their health, and making constant trips to their doctors pretending to be ill. Having invented yet another new definition of the syndrome, we now accept that, on the contrary, chronic fatigue syndrome is a very real and extremely widespread illness, mainly affecting poor ethnic minorities who don't have enough friends and don't do enough exercise, leading to extreme tiredness and headaches which they suffer in silence and don't tell their doctors about. We hope this clarification clears up any confusion our earlier research may have caused. Much more research, though, is obviously needed...preferably by us."

Nope, at this rate, I don't think they'll ever run out of things to do...they have a whole new narrative to concoct now, and a whole new population to denigrate...and they now have five times as many candidates for their CBT sessions as they had before. They could go on diluting the ME population with tired people like this for ever, or until the entire population is sick and tired of hearing that there's 'no evidence' that anything except a series of conversations with psychologists can help them...
 
Messages
10,157
New research published by BioMed Central's open access journal BMC Medicine shows that ethnicity, depression, lack of exercise or social support, and social difficulties are major risk factors for CFS.

I have to say, I stopped reading after this statement because my overwhelming thought was "piss off". Ethnicity has nothing to do with ME. Depression, lack of exercise or social support and social difficulties are not major risk factors they are the result of the illness. Raging stupidity. Face palm. Epic fail. Morons.
 
Messages
13,774
I've seen several studies reporting that being more active than normal is a risk factor for CFS, and several reporting that doing less than normal is a risk factor. Maybe one day they'll do a study which shows doing exactly the average ammount of activity is a risk factor for CFS. I expect that would be taken as evidence of a behavioural cause for CFS too.

Haven't there been other studies showing CFS is not related to ethniicity? I'm surprised they bothered with a press release for this.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Problem with defining the illness?

I am surprised that Wesseley is using CFS in his article and not ME.
In London, we tend to talk about ME more. For them, both conditions are two different entities. CFS is psychosomatic. ME is neurologic. I am probably mistaking?
 

Dolphin

Senior Member
Messages
17,567
I've seen several studies reporting that being more active than normal is a risk factor for CFS, and several reporting that doing less than normal is a risk factor. Maybe one day they'll do a study which shows doing exactly the average ammount of activity is a risk factor for CFS. I expect that would be taken as evidence of a behavioural cause for CFS too.
:Retro smile:

Here's a comment in reply to another paper Peter White was the co-author of.

http://www.biomedcentral.com/1471-244X/6/53/comments
Accumulating evidence that CFS patients were actually more active on average than controls before becoming ill

The main finding in this study is that "patients with chronic, unexplained fatigue rated themselves as more active before their illness (p < 0.001)" and that "these differences remained significant for the subset of patients who met strict criteria for chronic fatigue syndrome or fibromyalgia"[1].

The authors then spend a lot of time speculating about whether this could have been an "overestimation of previous activity" and giving the "altered perception" hypothesis.

Given that they only had self-report data to go on, it is interesting to read a recent prospective population study on the illness[2]. It followed 4779 people from birth for the first 53 years of their lives. At age 53, 34 reported a diagnosis of CFS. Amongst other things, it found that "increased levels of exercise throughout childhood and early adult life and a lower body mass index were associated with an increased risk of later CFS." As it was a prospective study, there was no issue of recall bias. It also wasn't simply self-rated, as it also involved reporting by a teacher at age 13. Also they used the subject's BMI index - patients who went on to have CFS at age 53 had a (statisically significant) lower BMI than those who did not go on to develop CFS at ages 36 and 43 (before they had CFS). The authors say this "this may provide some indirect but objective evidence of increased levels of activity at these ages, especially as this difference had resolved by the age of 53 years" (when the people with CFS were no longer more active).

In the current study[1], the authors say "the only prospective cohort study of risk factors for CFS found that sedentary behavior at 10 years of age doubled the risk of self-reported CFS in adulthood"[3]. I thought I would give more information on that finding as it only related to a small percentage of the "CFS/ME" patients and doesn't show that on average patients were more inactive: in response to the question, about the amount of sport played in spare time at 10 years, 16% of the people who ever had CFS/ME by age 30 were in the "never or hardly ever" category compared to 8% in the people who didn't go on to have CFS/ME (so 8% more than expected - but it still meant that 84% in the "sometimes" and "often" categories). However the authors of the study[3] didn't combine this data in some way with a question on sports played within school: for the category "Played >2 hours/week of sport at school at 10 years", 52% of those who ever had CFS/ME by age 30 were in this category compared to 44% of those who never had CFS/ME by age 30. The unadjusted OR for this at 1.4 nearly reached

statistically significance (95% confidence intervals: 0.9 to 2.2). Some sort of combination of the two pieces of data would have been preferable - a person's body doesn't distinguish between activity done within schools hours and in their spare time.

In the current study[1], the authors point out that their "findings are congruent with those of 3 retrospective studies reporting that CFS patients perceived themselves as more active before their illness began than healthy controls"[4-6]. They also that "the high levels of physical activity reported by patients have been corroborated by their spouses, partners, or parents."[7]

With all this evidence from various sources about pre-morbid levels, researchers perhaps need to start showing more evidence before they will convince many of us of any speculative theories about CFS patients misperceiving how much activity and exercise they used to do.

[1] Smith WR, White PD, Buchwald D: A case control study of premorbid and currently reported physical activity levels in chronic fatigue syndrome. BMC Psychiatry 2006, 6:53. http://www.biomedcentral.com/1471-244X/6/53

[2] Harvey SB, Wadsworth M, Wessely S, Hotopf M: Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses Using a National Birth Cohort Study. Psychosom Med. 2008 Mar 31

[3] Viner R, Hotopf M: Childhood predictors of self reported chronic fatigue syndrome/myalgic encephalomyelitis in adults: national birth cohort study. BMJ 2004, 329:941. http://www.biomedcentral.com/pubmed/15469945

[4] Riley MS, O'Brien CJ, McCluskey DR, Bell NP, Nicholls DP: Aerobic work capacity in patients with chronic fatigue syndrome. BMJ 1990, 301:953-6.

[5] Van Houdenhove B, Onghena P, Neerinckx E, Hellin J: Does high "action-proneness" make people more vulnerable to chronic fatigue syndrome? A controlled psychometric study. J Psychosom Res 1995, 39:633-40.

[6] MacDonald KL, Osterholm MT, LeDell KH, White KE, Schenck CH, Chao CC, Persing DH, Johnson RC, Barker JM, Peterson PK: A case-control study to assess possible triggers and cofactors in chronic fatigue syndrome. Am J Med 1996, 100:548-54.

[7] Van Houdenhove B, Neerinckx E, Onghena P, Lysens R, Vertommnen H: Premorbid "overactive" lifestyle in chronic fatigue syndrome and fibromyalgia: an etiological relationship or proof of good citizenship? J Psychosom Res 2001, 51:571-6.

Competing interests

No competing interest.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
I find it so appalling that they spend time, energy and lots of money on such nonsense.
What does it accomplish? What have we learned that could possibly mean anything?
Who cares, anyway?
I can't believe reviewers take the time to look at this, and comment on it the way they do.
Their job must be so boring...

BOOOOORRRRIIIINNNNGGGG!
 
Messages
646
I've seen several studies reporting that being more active than normal is a risk factor for CFS, and several reporting that doing less than normal is a risk factor. Maybe one day they'll do a study which shows doing exactly the average ammount of activity is a risk factor for CFS. I expect that would be taken as evidence of a behavioural cause for CFS too.

Risk factor is one those terms that gets used in variable ways. Its quite clear that smoking tobacco is a risk factor in lung cancer that is if you smoke, there are well understood disease processes that take place, which greatly enhance the probability you will develop a carcinoma. In contrast, in diseases that are not well understood, risk factor is used as a short hand for an association which if observed to be present may increase the probability that disease x will develop.

In this second sense its quite possible that doing less and doing more would be risk factors simply because the statistical norm will vary between study populations. To make sense of the role of activity as a predisposing factor, a whole range of variables would need to be addressed: age at onset, type of onset, pre onset history, age at assessment etc.


Haven't there been other studies showing CFS is not related to ethniicity? I'm surprised they bothered with a press release for this.

The question would be what range/specificity of ethnicity is being looked at. If it is accepted that gender is a predisposing factor, then there must also be grounds to consider that ethnicity could also be an issue in susceptibility to M.E/CFS. It would actually be very interesting to see prevalence rates by both gender and ethnicity, across cultural and national boundaries because any difference would likely indicate diagnosis bias on the basis of gender.

Ethnicity studies really need to be carried out across National boundaries because minority populations can have significant lifestyle differences compared to both the majority in the country of citizenship, and (if it exists) the country/countries of comparable ethnic majority. African Americans for example experience a substantial negative disparity in good health compared to the majority population, this disparity may be a result of genetic differences but economic disadvantage is also likely to play a role.

If ethnicity is shown comprehensively to have no role in M.E/CFS prevalence, but gender does continue to have a role, then that would say something very significant about the condition i.e that the genetics of gender, or alternatively gender specific morphology, has a particular role in susceptibility to M.E/CFS. If gender specificity really is involved it raises some very interesting questions about the role of infective agents to date no infective entity has shown a preference for human male or female cells, (always allowing that some structures are not shared by both genders).

IVI
 
Messages
646
I find it so appalling that they spend time, energy and lots of money on such nonsense.
What does it accomplish? What have we learned that could possibly mean anything? Who cares, anyway?

Our results show that CFS is more common amongst the physically inactive, those with social difficulties and with poor social support, and ethnic minorities, especially in the Pakistani group studied, and that they are silently suffering."

I would suggest that is an important statement for health planners and adminstrators - the study is saying the service isn't working properly and is in effect 'discriminatory'. Of course there's irony in that there's sod all real help available to any of us, but that is a separate issue. At the very least this study should add to the 'prevalence' data for the UK, which is a small gain for everyone.

IVI
 

FunkOdyssey

Senior Member
Messages
144
If gender specificity really is involved it raises some very interesting questions about the role of infective agents – to date no infective entity has shown a preference for human male or female cells, (always allowing that some structures are not shared by both genders).

The immune response can be very different depending on gender. Sex steroids have powerful immunomodulating characteristics which influence this. Women also experience a period of profound immunosuppression during pregnancy.
 
Messages
646
The immune response can be very different depending on gender. Sex steroids have powerful immunomodulating characteristics which influence this. Women also experience a period of profound immunosuppression during pregnancy.

Those points are significant when dealing with autoimmunity (and more rarely issues of hetero immunity) but it's quite clear that human males and females have the same general level of susceptibility to all known infectious organisms. Women/girls are not getting cholera or typhoid or measles more often than men/boys - so although there may be differences in how the immune systems of males/females act, they have the same kill rate for all known infections. The gender imbalance is an issue that would have to be addressed if XMRV or some other infection were shown to be widely causative of M.E/CFS.

One can of course hypothesise on what the characteristics of a semi gender selective infection might be, but we are talking about new to science territory and there would be very stong evolutionary pressures against such a disease - killing off half the population amounts to anihilation of that species if the half that dies is essntial to reproduction, so the nature of the disease would have to be consistently non virulent bordering on passive.

IVI
 

FunkOdyssey

Senior Member
Messages
144
Right. It's not a question of rate of infection, but rather what disease and what symptoms manifest as a result of infection with that pathogen. Symptoms of most infections are mediated by the immune system's response to the pathogen, not the pathogen itself.

An example would be hepatitis B and C. The rate of infection of hepatitis is equal in men and women. However, the consequences of that infection most definitely are not equal: men have a two to eightfold higher risk of developing hepatocellular carcinoma, as a result of differences in the immune system's response due to gender.

So, gender differences in the immune response can be highly significant when dealing with infections and their sequelae.
 

FunkOdyssey

Senior Member
Messages
144
Those points are significant when dealing with autoimmunity (and more rarely issues of hetero immunity) but it's quite clear that human males and females have the same general level of susceptibility to all known infectious organisms.
IVI

Yeah this statement is just fundamentally incorrect. Here's another good example, more closely related to XMRV/CFS: HTLV-I associated myelopathy/tropical spastic paraparesis progresses significantly faster in women and they have higher HTLV-1 proviral loads.

Gender influence on the progression of HTLV-I associated myelopathy/tropical spastic paraparesis
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
They've provided yet more solid evidence that what they're studying is depression, not ME/CFS, because the risk factors they cite ARE risk factors for depression.

It would be quite simple to get a similar epidemiological profile for any disease. All you have to do is make up your own case definition for the disease, which includes people who are only depressed and excludes people who have the actual symtoms of the disease. Employing this easy method, you can demonstrate epidemiologically that cancer or Parkinson's or toenail fungus is a somatoform disorder.

Serious epidemiologists should rise up and drum them out of the corps.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
It's not what they are trying to find that bothers me, it's how they go about it.
We know that some ethnicities or gender are more genetically predisposed to certain diseases.
I'm sure all of us could name a few, so it would be a plus to find out if ME/CFS is more predominant in certain regions or populations. The real problem here is how they denigrate the poor people they are investigating and they are implying that CFS is more seen in very poor regions, low intellect people without a job, etc. We all know ME is a neurological disease. They are trying to give ME a really bad name and add to the psychosomatic belief.
It reminds me of a disease (can't remember what it was ! - could someone help me here?) that you could only catch in filthy places/houses...
It turned out to be false. It had nothing to do with that and they ostracized a whole bunch of people because of it.