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Nederlog

 

August 5, 2010

 

ME + me : The ME-Association takes an ethical position

 

I keep being unwell though today - unaccountably, as often - it feels a bit less bad than yesterday, which is pleasant, but does not fill me with wild hopes. There will be more on yesterday's topic - the danger of incompetently led forums for patients with ME - later, but meanwhile not all things in and around ME look bad or bleak.

One of the persons offended craftily and long by the apparent pros, if it is not a personal hobby, that was driven off from the ME-forums (no link: the likes of me are not permitted to even look at all the billshit at that Augias' stable), is Suzy Chapman, who calls herself ME Agenda, and has a fine site since quite a few years with lots of material about and around ME, carefully collected and checked for accuracy, and then put on line to inform the intelligent public and provide advocates with facts.

Ms. Chapman, who does not have ME herself, is involved in ME-advocacy because she has a son with ME since 12 years, and had done so since 2002, effectively, clearly and accurately, ranging over quite a large terrain, including the DSM5, the new American psychiatrists's diagnostic manual, that seems set on making almost any disease have a "psychogenic" side or angle that makes it amenable for deriving psychiatric incomes from; the ICD11, which is the DSM5's European version, so to speak; and the WHEEWHEE and LP scams (this psychologist thinks (*)).

I have written about it in Nederlog, although for the moment this seem mostly British pseudo-cures, to the joys and lasting benefit for quite a few, because it - quite bitterly - amuses me, and indeed I agree with Ms. Chapman on the merits of these treatments, therapies or whatever their traders and dealers  call them:

The last one or two are quite instructive as to the merits of what I discuss; the first connects it to the Reeves-Wessely-Bleijenberg school of pseudo-psychiatry, to which it is related.

This was all by way of introduction. Now to the real meat:

As my title - The ME-Association takes an ethical position - indicates indeed the British ME Association leadership also noticed the problem Ms. Chapman noted, became concerned, investigated the matter some, and acted, with a press release, that follows, with a brief comment of mine after it:
 

Scientific trial involving children and the Lightning Process is unethical,
says joint statement issued by two national ME charities

 
Wednesday, 04 August 2010 17:15

A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is “unethical”, say two of Britain’s leading ME/CFS charities – The ME Association and the Young ME Sufferers Trust.

In a joint statement issued today (4 August 2010), the two charities say:
 
We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children.
 
The pilot study, scheduled to start in September, will look at the feasibility of recruiting children aged eight to 18 with ME/CFS into a randomised controlled trial (RCT) comparing the Lightning Process with specialist medical care. It is planned that over 90 children aged between eight and eighteen and their families will be involved in the study.
 
The Medical Research Council (MRC) produces specific guidelines for research involving vulnerable patient groups. The document ‘MRC Medical Research Involving Children’ is quite clear on this issue. It poses the question: ‘Does the research need to be carried out with children?’ In answer, the MRC states: ‘Research involving children should only be carried out if it cannot feasibly be carried out on adults.’
 
The ME Association and The Young ME Sufferers Trust do not believe that it is ethically right to use children in trialling an unproven and controversial process such as the Lightning Process.
 
A survey of 4,217 people carried out by the ME Association on the management of ME/CFS found that over a fifth of those who had tried the Lightning Process were made worse (7.9% slightly worse,12.9% much worse). If any trial is to be held, it should first be on adults, who can give informed consent. No rigorous RCTs into the application of the Lightning Process have ever been undertaken.
 
Despite many years of scientific research there is still no single diagnostic test for ME/CFS, nor is there a curative treatment. The theory upon which the Lightning Process is based, together with its claim that the prolonged nature of the illness is caused by ‘the adrenaline, nor-adrenaline and cortisol loop’ is not scientifically proven. Moreover, the Advertising Standards Authority recently ruled that an advertisement in an internet sponsored link containing claims of its effectiveness by a Lightning Process practitioner should be removed. We understand that the practitioner will be involved in this study and we find this concerning.
 
The Trading Standards departments of two local authorities have also taken action over therapeutic claims by Lightning Process practitioners following referrals by Dr. Charles Shepherd of the ME Association. The Lightning Process calls itself a training programme, not a medical treatment, combining concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. It claims to be effective for ME/CFS  and psychological problems such as anxiety, stress, depression, guilt, low self esteem. Any evidence for this effectiveness on ME/CFS is purely anecdotal. ME has long been classified by the World Health Organisation as a neurological illness, not a psychological condition.
 
We cannot approve of a study involving children as young as eight when no rigorous trials have first been undertaken into the safety, acceptability, long and short-term effects of the application of this controversial and unregulated ‘process’ with adults.
 
Furthermore, we have serious concerns about the primary outcome measure, which is school attendance after six months. Children have a legal right to ‘suitable education’ for their particular needs, which may or may not include school attendance.
 
The statutory guidance ‘Access to Education for Children and Young People with Medical Needs’ explains that whilst it is desirable for children to be educated in school, other forms of education must be provided for those who need it. The Chief Medical Officer’s Working Group Report on CFS/ME (DOH 2002) stated that most children with ME will need education in their homes at some time, potentially for a considerable period. In 2009 the Education White Paper ‘Back on Track : A strategy for modernising alternative provision for young people’ included virtual education. Chapter 7, ‘Learning from the best and supporting innovation’, spoke of ‘e-learning and virtual provision, particularly for pupils who cannot attend school due to health needs.’ Accessible education is also provided for in disability discrimination law.
 
If school attendance is the primary outcome measure of this study, families involved may then feel pressurised into avoiding alternative forms of education which would benefit their children and to which they are legally entitled.
 
For all these reasons, it is our considered opinion that this study of the Lightning Process in children is unethical and should be abandoned.
 
NOTES TO EDITORS

 
References:
 
'£164,000 awarded for new research into the treatment of a chronic childhood condition'.
 
Press release issued by The Royal National Hospital for Rheumatic Diseases, which can be found at their press release page:
 
http://www.rnhrd.nhs.uk/index_sub_menus/news/news_menu.htm

Advertising Standards Authority ruling:
 
http://www.asa.org.uk/Complaints-and-ASA-action/Adjudications/2010/6/Withinspiration/TF_ADJ_48612.aspx

 

As it happens, I quite agree:

Not only does all this Lying ProcessTM and WHEEWHEE stuff strike this elderly very learned psychologist - who has seen oodles of mad but very pretentious (expensive) therapies of the most unimaginable whackiness and idiocy, promising eternal happiness, health, youth, enlightenment, cures of all diseases, and what not, being spread like manna fallen from high heaven in and around Amsterdam, where such things have been quite fashionable since the late sixties, indeed making untold fortunes for the successive peddlers of such schemes - as total and utter crap:

It seems to me both quite dangerous and unethical to try to find out ("research") whether this crap indeed is crap by submitting children to this totally untested intellectually and scientifically detestable nonsense.

  • In a civilized state children, and ill children at that, are not made the subject of experimental research whether some obvious totally untested religion-like sounding "treatment" bullshit will be harmful for them. That is simply not on and is forbidden in a civilized society.

Whether this indeed will stop it remains to be seen, as in fact it depends on the government doing its job properly and ethically, according to its own existing rules and regulations, that do forbid such things, but at least the ME Association and Ms. Chapman have tried to make reason prevail. (*)

Added later in the day: ME Agenda and LP: A part of Ms. Chapman's site with the above Press Release and a lot more about ME and LP.  


P.S. And let me just remind the reader that the neurasthenic Nietzschean misfits on ME-F do not want Ms. Chapman there because... her material about ME is not fit for ME-F, because they themselves are far too stupid to understand it. This of course is not exactly what they say:

What they say is that they suffer from "severe cognitive impairment", and therefore no one must read ME Agenda's material on ME-F, and in fact she shouldn't be there at all, with such difficult and unreadable material.

How mentally sick can you get and still write to ME-F and receive a hearty huggy welcome by admins and mods? Well... as mentally sick as a neurasthenic Nietzschean spouting Bill Reeves' and American rightist neo-darwinian BS, so beloved there by admins, mods and prominent if wacky forum members with selfadmitted "severe cognitive impairment" and neurasthenia. 

Umwertung aller Werte, indeed! (**) The idiots have taken over the asylum! (***)

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.

 


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


P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.


(*) Two other remarks, both aside:

1. I do think medical and professional organizations ought to move into these and other health scams: Either the studies of medicine and psychology qualify one scientifically and hopefully ethically, and then you know these sciences are both intellectually and ethically totally inconsistent with the WHEEWHEE and LP scams, and medical and psychological professional organizations should DO something to stop pseudos from ruining patients health while removing income from professional medical doctors and psychologists, or else the studies of medicine and psychology do NOT qualify one scientifically, let alone ethically, and all these academically disqualified persons should preach the forces of WHEEWHEE or turn to Eastern Religion or fundamentalist Christianity (also full of healers who are dealers in promises trading on people's foolishness).

2. Personally, I find it all pretty sickening, and only fit for satire, for one placed like me. This is not something I can discuss reasonably in socalled rational and reasonable tones on a site like mine, for a similar sort of reason as there is no rational and reasonable argument possible on the main facts of the holocaust or the roundness of the earth: A sane person isn't going to sit around the table with flatearthers to convince them that physics show they are mistaken. Duplicity, deceit, false promises, health-scams and stupidity, beyond a certain point, are only fit or merciless satire or the law courts.

(**) Two explanatory remarks for the non-German AND the German speakers:

1. The German "Umwertung aller Werte" is a Nietzschean slogan that translates as "Revaluation of all values". Indeed, this is what happened in Germany between 1933 and 1945, with that phrase used, among others, although it is fair to Nietzsche (though not to Master Eric) to remark that he very probably would abhorred it as insanity of the more beastly class(es) of people. Indeed, Nietzsche himself was neither an anti-semite nor a lover of Germany.

2. For German speakers: I have, it seems, a fair amount of German readers (and non-German readers in some 30-80 countries, depending on the month or day). I do sometimes check the statistics for my main site, that is done by a program that displays various things, including Google-translations made from material on my site. Well... if you want a good laugh, and read English and German easily, a German Google-translation of a piece on my site should guarantee it: Google's artificial intelligence does have no shadow of an ikling of a hope of a chance of a grasp of long sentences, as I often write. Quite funny, but not a good translation at all.

(***) I do not know who invented the phrase, but here are two learned relevant references:

Maarten Maartensz

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