Chronic fatigue syndrome 'affects one in 100 pupils'

[wdb]

Yes I think they have realised that they are heading down a bit of a dead end with the current treatments so they have two options, change the treatments and look for something that might actually work or change the definition of the disease into something that can be cured with the treatments that they offer. I guess they picked the latter.

 

[Vitalic]

Hi, as I said on another post today, there is a large percentage of misdiagnosis here in all probability. Many of these children will have post viral fatigue syndrome, and recover (usually) in some months to a year. Whatever treatment they were on in this time will then be touted as the cure by some, whether or not it helped. I very much doubt any of these children were diagnosed by ME criteria - maybe a few, but unlikely to be more. As a result it should say:

"One in a hundred children have something wrong with them that includes fatigue as a symptom. Some of these might qualify for a CFS diagnosis, and some might qualify for a ME diagnosis."

On the plus side the side bar on the article does mention that CFS/ME might actually be several illnesses not one.

Bye, Alex

Have you ever tried explaining this to someone that isn't aware of the politics? A relative who knows about my illness mentioned this story to me today thinking it was some kind of breakthrough that must be really important. My heart sinks when that happens because I rarely have the energy or the patience to go through the entire tedious story.

 

[oceanblue]

Relatively mildly-affected cases

Whatever case definition they use, the cases in this study are substantially less-affected than their normal clinc cases, as shown in Table 1. School attendance and physical function are much higher, while fatigue is lower (p<0.001 for all):

Fatigue score (Chalder scale): 20 (vs 24.4 for clinic patients).
No fatigue at all scores 11; due to a ceiling effect the max possible score of 33 is reached well before maximum fatigue.
SF36 Physical Function: 75 (vs 50) [my est: given as 25.5/30 for study, 19.8/30 for clinic]*
School attendance: 66% (vs 39%)

*estimated 0-100 scores
My track record on SF36 score interpretation isn't great , but the authors say "the 10-question physical function subscale of the SF36 (a well-validated health survey questionnaire where the worst physical function scored 10 and good physical function scored 30)", which looks like each question was scored 1,2,3 rather than the conventional 0,5,10. To convert to 0-100 I deducted 5 points from a total of 100 for each full point below the max score of 30. But I'd be grateful if someone could check this approach.

Perhaps the fact that these cases are - on average - not at all severe, explains why the improvement rates were so high.

 

[Esther12]

Perhaps the fact that these cases are - on average - not at all severe, explains why the improvement rates were so high.

Mild cases of abnormal fatigue during (for example) a teenage growth spurt doesn't sound that unusual, and would be likely to resolve without 'treatment'. Equally, it's quite normal to feel tired for three months after glandular fever, and most go on to continue to get better without intervention... if 'ME' is going to be defined increasingly loosely, control groups who are not being 'treated' are needed before anything can be said about whether it's worth paying for this stuff.

It's so difficult to gather objective measures for CFS, that a degree of trust is required for a researchers work to be of any use what so ever. Crawley's claim that PACE showed 30-40% of CFS patients recovered following CBT/GET as part of the way that she's been dishonestly chasing funding for CBT/GET, has meant that it's impossible to take anything she says seriously.

 

[oceanblue]

Mild cases of abnormal fatigue during (for example) a teenage growth spurt doesn't sound that unusual, and would be likely to resolve without 'treatment'. Equally, it's quite normal to feel tired for three months after glandular fever, and most go on to continue to get better without intervention.

Mean time to assessment (ie length of illness) was 22.5 months so probably not just a short-term issue for most. In her Radio 4 interview Esther Crawley said most cases were post-viral.

 

[Esther12]

Mean time to assessment (ie length of illness) was 22.5 months so probably not just a short-term issue for most. In her Radio 4 interview Esther Crawley said most cases were post-viral.

Thanks. I've not read the paper (I don't think I will), but had heard the post-viral statement from the radio (although don't know if it's likely to be true - maybe a novel new definition of 'most' was used!?).

I realise that there could be advantages to diagnosing people quickly, but lumping in together all teenagers who have suffered from unexplained fatigue for 3 months seems like a really dodgy way of defining a syndrome, or determining whether individuals need CBT. I had hang-overs that felt like they lasted that long!

I'm sounding more and more ranty. The 30-40% recovery rate thing has really pissed me off. I just don't see how anyone can take her seriously when she's trying to justify funding her clinics so dishonestly.... and yet she's probably the most influential CFS researcher in the UK right now! I need to go away, and start learning how to write in a way that does a better job of hiding my burning hatred, otherwise it will just be counter-productive. The Guardian will soon want to interview me so that it can run an article about demented CFS patients refusing to accept the Science around there condition, and hysterically insisting that data has been spun... without bothering to check any of the evidence themselves.

Quote for the Guardian:

Evidence from a recent evidence trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment [24].

Link for the Guardian: http://www.biomedcentral.com/1472-6963/11/217

They'd probably be convinced by it though. Tate Mitchell's explanation of PACE's outcome measures might help: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112a&L=co-cure&T=0&P=1152

 

[Dolphin]

SF36 Physical Function: 75 (vs 50) [my est: given as 25.5/30 for study, 19.8/30 for clinic]*

*estimated 0-100 scores
My track record on SF36 score interpretation isn't great , but the authors say "the 10-question physical function subscale of the SF36 (a well-validated health survey questionnaire where the worst physical function scored 10 and good physical function scored 30)", which looks like each question was scored 1,2,3 rather than the conventional 0,5,10. To convert to 0-100 I deducted 5 points from a total of 100 for each full point below the max score of 30. But I'd be grateful if someone could check this approach.

Not far off: to convert, subtract 10 and multiply by 5 i.e. 77.5 for study, 49 for clinic. Basically it's the percentage of the gap from 10 to 30.

 

[Graham]

You may be interested to know that Tom Kindlon has posted a response to the paper :
"Uncontrolled study proves little about value of therapy received"
http://bmjopen.bmj.com/content/1/2/e000252.full/reply#bmjopen_el_156

Currently it is the second one down. You will need to have your grey matter activated!

 

[WillowJ]

Have you ever tried explaining this to someone that isn't aware of the politics? A relative who knows about my illness mentioned this story to me today thinking it was some kind of breakthrough that must be really important. My heart sinks when that happens because I rarely have the energy or the patience to go through the entire tedious story.

I use a shortcut. "You know how Multiple Sclerosis used to be called "Hysterical Paralysis"? It's like that--they did this to epilepsy and autism (remember "refrigerator mother syndrome"?) also.

"It's actually quite common for the medical field to decide that if something is too complicated to figure out easily or the doctor doesn't know what to do, that it must be the fault of the patient (or the patient's family). For some reason we are stuck in this dynamic longer than most diseases. That's why we have had to become our own advocates..."

It usually works. People generally understand if you reference something familiar, put it in a context for them. They can't understand it just out of the blue; it sounds like bizarre fiction, totally disconnected from the world they live in and experience (or at least from the way they want to believe the world is, those demi-gods the Scientists nobly pursuing Truth through Science and all that). You have to ground it to something they already know.

 

[alex3619]

Does anyone have a link to a good paper that lists all the diseases that were once thought to be psychosomatic and now are not though to be psychosomatic? I recall several more: diabetes, lupus, rheumatoid arthritis. It would be nice to get a published list in a peer-reviewed journal. I vaguely recall reading a list of 22 diseases at one point, but i cannot recall every disease on it.

On another related topic, both Canada and Australia has people talking as though over 1% of the population have CFS (not an ME diagnosis). I suspect this is erroneous, but if not then it indicates an increase in prevalence. The Canadian prevalence has its own thread here somewhere, but does anyone know the basis for the claim for Australia?

Question, questions, always more questions.

Bye, Alex

Found uncopyable list that includes high blood pressure, peptic ulcers, asthma, hives, eczema, migraine and tension headaches: but psychosomatic at this time meant physical illness that is stress related, not all in the mind.
http://books.google.com.au/books?id...hosomatic diseases sclerosis diabetes&f=false

This is better: http://mpkb.org/home/alternate/psyc...f_psychologizing_problems_with_organic_causes
For example: "Even more than 100 years after this idea was first proposed, researchers remain at a loss to find any compelling scientific evidence for somatoform disorders. Psychology, physiology and functional brain imaging technology (e.g. EEG, fMRI, PET, or SPECT) have failed to elucidate the neurobiology of conversion disorder.36 Methodologic problems of such studies abound.37 Even in cases where psychological stress can be measured in patients with the diagnosis of somatoform disorders, these reactions to stress are similar to the severity of psychological stress in non-psychosomatic neurological disorders."

And this: "Lupus, multiple sclerosis, AIDS, and Lyme disease suffered similar fates before tissue evidence was available. Patients were belittled by armchair speculators masquerading as scientists. Who among us believes this was helpful? A simple I don't know would have been better than specious speculation. " Does this sound familiar to anyone?

 

[Dolphin]

Does anyone have a link to a good paper that lists all the diseases that were once thought to be psychosomatic and now are not though to be psychosomatic? I recall several more: diabetes, lupus, rheumatoid arthritis. It would be nice to get a published list in a peer-reviewed journal. I vaguely recall reading a list of 22 diseases at one point, but i cannot recall every disease on it.

On another related topic, both Canada and Australia has people talking as though over 1% of the population have CFS (not an ME diagnosis). I suspect this is erroneous, but if not then it indicates an increase in prevalence. The Canadian prevalence has its own thread here somewhere, but does anyone know the basis for the claim for Australia?

Question, questions, always more questions.

Bye, Alex

Found uncopyable list that includes high blood pressure, peptic ulcers, asthma, hives, eczema, migraine and tension headaches: but psychosomatic at this time meant physical illness that is stress related, not all in the mind.
http://books.google.com.au/books?id...hosomatic diseases sclerosis diabetes&f=false

This is better: http://mpkb.org/home/alternate/psyc...f_psychologizing_problems_with_organic_causes
For example: "Even more than 100 years after this idea was first proposed, researchers remain at a loss to find any compelling scientific evidence for somatoform disorders. Psychology, physiology and functional brain imaging technology (e.g. EEG, fMRI, PET, or SPECT) have failed to elucidate the neurobiology of conversion disorder.36 Methodologic problems of such studies abound.37 Even in cases where psychological stress can be measured in patients with the diagnosis of somatoform disorders, these reactions to stress are similar to the severity of psychological stress in non-psychosomatic neurological disorders."

And this: "Lupus, multiple sclerosis, AIDS, and Lyme disease suffered similar fates before tissue evidence was available. Patients were belittled by armchair speculators masquerading as scientists. Who among us believes this was helpful? A simple I don't know would have been better than specious speculation. " Does this sound familiar to anyone?

People interested in this might be interested in this paper which I recall finding of interest:

Goudsmit, EM. The Psychologisation of illness. In Brostoff J, Challacombe SJ (eds.) Food Allergy and Intolerance. 2002. 2nd Edition. WB Saunders. Pp. 685-693.
Free at: http://freespace.virgin.net/david.axford/psy-algy.htm

 

[Enid]

Thanks Dolphin - a very interesting paper - the arrogance of Docs resorting to a "psychological" explanation for things they just do not yet understand is so stunningly ignorant. Goes to the core it seems.