document: overzicht immuunafwijkingen bij ME 1983-2011

[poppetje]

Frank linkt er al naar op zijn site, maar ik wilde het ook nog even onder de aandacht brengen. In een meer dan 60 pagina's tellende opsomming geeft Margaret Williams een overzicht van de wetenschappelijk aangetoonde immunologische afwijkingen bij ME in de afgelopen twee en een halve decennia (1983-2011).

http://www.investinme.org/Documents/Jou ... ue%201.pdf

het artikel van Margaret start vanaf pagina 29, haar conclusie vanaf pagina 96, zie hieronder gekopieerd.

Haar conclusie
There can be no possible doubt that ME/CFS is essentially a disorder of the immune system. Given the extent of the evidence-base (of which the above illustrations may barely scratch the surface), it is incomprehensible how the Wessely School psychiatrists continue to wield such powerful influence over the ME/CFS arena.
Many people deem this situation to be a scandal of epic proportions.

As Dr Vance Spence, a respected medical scientist specialising in vascular medicine in ME/CFS, said in an article on 25th May 2004 in the Derry Journal (“The ME Scandal”): “I can think of no other illness where such a powerful schism exists between those who suffer from it and those whose responsibility is to care for them. How can it be that an illness that affects between 100,000 and 200,000 persons of all ages in the UK and maybe as many as one million in the United States of America is no longer referred to in medical textbooks, is not cited in medical research indexing systems and rarely features in the syllabus of undergraduate medical education in medical schools? Why have the experiences of these patients been largely ignored, their testimonies…undervalued, even ridiculed, and their requests for assistance met often with prejudice and disbelief? (Co-Cure RES, ACT 8th June 2004).
Could the answer lie in just three words: The Wessely School?

On 1st August 2004 John Herd re-published an article he had written seven years earlier (in 1997), saying how profoundly rhetoric has permeated the (ME)CFS arena, and that the tragedy of lasting misperceptions means that it is not enough for doctors to conduct their research and see patients in their clinics – they must speak up about their evidence that ME/CFS is not a psychiatric disorder: “Throwing forth theories of psychiatric causations of ME/CFS…is not science. Science, hard science, is objective….The proof that transforms theory into science is concrete evidence found in cells…Psychiatric research is…highly interpretive… (it) lacks the concrete evidence of biologic research (and thus) can be driven by its original theories instead of…concrete evidence… “Science” seems to mean different things to different people. Speculation, especially if it comes from a well-known name, in some people’s eye becomes fact as soon as it appears in a peer reviewed medical journal….Why is anyone listening to self-proclaimed experts who have direct connections with corporate entities that only wish to protect their financial assets?” (Co-Cure ACT, 1st August 2004).

Herd followed this up by saying: “More and more doctors have become entrenched in an ‘all in the head’ bias about ME/CFS that is not founded upon evidentiary science. Instead of welcoming advancements of science, their minds have become ever more closed to objective laboratory findings that conflict with their belief systems….Doctors who are uninformed about the illness and those firmly entrenched in flawed ideologic bias may not even bother to read new research articles (so) many patients see no improvement in accessibility to adequate clinical care…Proponents of the idea that ME/CFS is a psychosocial phenomenon have been getting more and more of their articles in the medical journals. They hold a powerful and influential position in the World Health Organisation and in many influential governmental/medical committees….We must find ways to remove ideology and speculation from the equation (and) develop new means of having science speak for itself to break the logjam of flawed ideologic bias” (Co-Cure ACT: 19th October 2004).

It is high time for the Wessely School and all to whom they act as advisors to engage with the immunological basis of ME/CFS. As one sufferer pointed out in 2005, attributions do not maintain this illness, any more than they maintain cancer, diabetes, multiple sclerosis, or any other physical illness (Co-Cure ACT: 27th July 2005). In fact, the objective and reproducible evidence plainly shows that ME/CFS is maintained by a dangerously dysregulated immune system.

There is such a gross mismatch between the severity and complexity of ME/CFS and the medical/public perception of the disorder as promulgated by the Wessely School that, until these psychiatrists are held to account (and health care professionals and public alike are informed and educated about the nature of ME/CFS), patients will continue to suffer iatrogenic harm.

Wessely has often claimed that he does not want to get into the fruitless “organic” versus “functional” debate, but many people believe
(justifiably, when one reads what he has actually published about people with ME/CFS over the last 25 years) that he has done more than anyone else to fan this particular flame by distorting the perception of the disease; they also believe that he has done much to prevent ME/CFS attaining disease legitimacy and thus to halt not only the progress of medical science but also the provision of care for very sick patients.


The body of biomedical evidence about ME/CFS from across the disciplines is now so extensive that the question repeatedly asked is: at what point will that body of scientific knowledge be so great that it will be considered serious professional misconduct to ignore it and to continue to deceive physicians and patients alike by pretending that it does not exist?

There is a body of informed opinion (including clinicians, medical scientists, lawyers, research analysts, university lecturers and members of other professions) that the General Medical Council ought to be required to assess the Wessely School’s fitness to practice medicine: many people are of the view that the Wessely School are a risk to ME/CFS sufferers by their erroneous assertion that ME/CFS patients’ multiple symptoms “have no anatomical or physiological basis” (Brit J Hosp Med 1994:51:8:421-427), a categoric Wessely School view that has not changed over the intervening 18 years and which seems to be reflected in NICE’s proscription of appropriate laboratory tests (in particular, no immunological tests may be carried out); by their ignoring of the biomedical evidence, and by their insistence that ME/CFS is a functional/behavioural disorder and a “pseudo-disease” that must not be investigated as this would reinforce sufferers’ alleged misperceptions that they are physically sick.

However, even though the national implementation of the Wessely School’s personal philosophy is not based on medical science, nothing might come of a complaint to the GMC because, as Dame Janet Smith (The Rt Hon Lady Justice Smith, a High Court Judge and former President of the Council of The Inns of Court) aptly said on 3rd October 2011, the GMC is “a deeply dysfunctional institution” (Channel 4; Dispatches).

On 26th March 2012 the Prime Minister, David Cameron, said on television that the dementia situation in the UK is “a national crisis”.
He needs to be aware that there is also a national crisis with the ME/CFS situation in the UK, where sick people are denied the scientific reality of their disease and instead are coerced into inappropriate psychological interventions that have been shown to make 82% of ME/CFS sufferers worse.

[tanto]

Poppetje,
Dank je voor het plaatsen!
Super.

Volgens mij begint de conclusie in bijgevoegd document op pag 96. Ik kon het nl even niet vinden.

Groetjes t.

[poppetje]

He tanto, ja dat klopt.

Het was misschien een beetje verwarrend verwoord, maar ik bedoelde dat vanaf pagina 29 in het document (link is naar een document met meerdere artikelen) het artikel van margaret start (leek nu misschien inderdaad te verwijzen naar de conclusie), ik zal de tekst even aanpassen zodat het duidelijker is. De conclusie die ik heb gekopieerd start inderdaad op pagina 96.

[tanto]

Thanks, mijn brein werkt niet zo goed deze dagen.

[felixloena]

al die jaren al bewezen..... maar er gebeurt nog steeds niks. te triest voor woorden