Nederlog

 

 April 10, 2011

 

me+ME: Site news & some ME news

 

Another brief Nederlog, as described in the title

1. Site news

The site news is that I changed the opening page a little on the left side, by changing the ordering of the topics, and that I added Explanations, on the opening page on the right hand side below - but this I started and have not finished yet, and mention only because it is a change of the opening page, and Explanations is new, but needs more work.

I do as I can, not as I want. In that context:

2. Some ME news

I mentioned five days ago

and now there are videos from it, as it was held namely here

One of the speakers was prof.dr. Leonard Jason. This is also on video on Youtube and dr Speedy has the following item about it

from which I quote - and this is dr Speedy summarizing, while I have bolded some nots:

He specifically mentioned the UK PACE Trial (carried out by Wessely School psychiatrists) and noted the controversy flowing from that trial.

The PACE Trial Principal Investigators (PIs) intentionally sought as heterogeneous a cohort of “fatigued” people as possible in order to enhance both recruitment to the trial and the alleged “generalisability” of the Wessely School’s cognitive re-structuring and aerobic exercise programme to as many “fatigued” people as possible (Trial Identifier:3.6).

Such intentional heterogeneity obviously captured people with affective disorders in which “fatigue” is a prominent feature, yet the PIs assert that they were studying patients with “CFS/ME” (which they insist is the same disorder as ME/CFS, a complex neuroimmune disorder) when their definition of “CFS/ME” has few of the features of classic ME/CFS. Indeed, the pathognomonic feature of ME/CFS -- post-exertional fatigability with malaise -- is not required in their definition of “CFS/ME” which has on-going “fatigue” as the primary symptom.

(....)

In the UK, NHS staff are likely to obtain their knowledge about the PACE Trial from the “NHS Choices” Information page on its website (http://www.nhs.uk/news/2011/02February/Pages/therapies-moderately-improve-CFS.aspx).

Perhaps unsurprisingly, this website contains frank misinformation about the results of the PACE Trial; for example, the PACE Trial was not a “controlled” trial as claimed; the Oxford criteria are not “standard diagnostic criteria for CFS” when “CFS” is deemed to include ME -- they are used only by the Wessely School who produced them in 1991; PACE participants were not “confirmed as free of mental health problems such as depression and anxiety”; participants did not meet the (proposed) “London Criteria” for myalgic encephlaomyleitis, but a version compiled by the Chief PI (Professor Peter White) himself, which was basically the Oxford criteria without psychiatric illness; SMC (specialist medical care) was not universally provided by a doctor “with specialist experience in CFS”; 22 of these “experienced specialists” were in fact trainees (all from the same centre) who, by virtue of being trainees, could not be called experts experienced in the medical care of people with CFS.

Thus despite hollow assurances from the Department of Health, the grass roots situation in the UK remains dire for people with ME/CFS, so the following quotations from Professor Jason at the SOK Workshop are of particular relevance to patients themselves and to the various agencies of State to which the Wessely School are advisors on “CFS/ME”:

“If investigators select samples of patients who are different in fundamental aspects of this illness because of ambiguities with the case definition, then it would be exceedingly difficult for investigators to consistently identify biomarkers”.

“In summary, any scientific enterprise depends on reliable and valid ways of classifying patients into diagnostic categories. When diagnostic categories lack reliability and accuracy, the quality of the treatment and clinical research can be significantly compromised”.

“If CFS is to be diagnosed reliably across health care professionals, it is imperative to deal with criterion variance issues and provide specific thresholds in scoring rules for the selected symptomatic criteria”.

In the discussion that followed his presentation Jason was emphatic:

“Those folks who have primarily affective disorder need to be differentiated”.

“I think the key issue is the defining of the sample and in our current scientific publications, the basic description of who these samples are is completely inadequate, and we’ve got to do something to change that….if we don’t tackle that issue…our foundation is just going to be shaky”.

Quite so. More here.


P.S. Corrections, if any are necessary, have to be made later.


As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon insufficient evidence".
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
 


    "Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
"
     - (Shelley, "Prometheus Unbound") 


    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

 


See also: ME -Documentation and ME - Resources


Maarten Maartensz (M.A. psy, B.A. phi)

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