Thursday, August 21, 2008

Zombie Science In ME/CFS

From 15/8/08

Mental health researchers at The Institute of Psychiatry (London) are
currently undertaking a study of "social cognition". The project seeks to
find out whether "the processing of social information" is affected in
people with anorexia nervosa and whether or not people with anorexia can
recognise complex emotions in other people.

The anorexia group will be compared with healthy controls and also with
people who have "CFS", the latter being recruited through outpatient
services of The South London and Maudsley NHS Foundation Trust.

The project was announced in 2007 just before the publication of the NICE
Guideline on "CFS/ME".

Recruitment for this "research" will run until the end of 2008 and the
project will be completed in 2009.

( )

The study literature states: "The comparison with CFS will allow
(researchers) to gauge whether any social cognition deficits are unique to
anorexia, or reflect more global symptoms of psychiatric illness with marked
physical symptoms".

So there we have it in black and white: according to researchers at the IoP
(the home of stalwart supporters of CBT and GET for "CFS/ME" Professors
Simon Wessely and Trudie Chalder), "CFS" is "a psychiatric illness with
marked physical symptoms".

The background to the project states: "Anorexia nervosa and chronic fatigue
syndrome are classical psychosomatic disorders where response to social
threat is expressed somatically (e.g. Hatcher & House, 2003; Kato et al
2006; Schmidt et al 1997). Other similarities between these disorders
include strong female preponderance and overlapping personality
characteristics, such as being introverted and avoidant. Aberrant emotional
processing is a strong candidate as a maintaining factor for these disorders
(Schmidt & Treasure 2006)".

Is it by chance alone that this "research" coincides with the publication of
the NICE Guideline and that the only "evidence" upon which the NICE
Guideline Development Group relied is that of the Wessely School, whose
assumption about the nature of "CFS/ME" is that it is a psychosomatic
disorder and whose model and management recommendations are based on "fear
avoidance" and "deconditioning"?

It is surely remarkable that the beliefs of the Wessely School about
"CFS/ME" (in which they unequivocally include "ME/CFS") remain uninfluenced
by the ever-mounting biomedical evidence which proves their beliefs to be
seriously misinformed.

A possible explanation has been put forward by Professor Bruce Charlton,
Editor-in-Chief of Medical Hypotheses; Emeritus Professor of Public Policy
at the University of California and Reader in Evolutionary Psychiatry at the
University of Newcastle (UK).

Charlton is well-known for his campaign to breathe new life into academic
medicine in order to capture issues that matter to patients and which would
make a difference to their lives.

In a compelling Editorial (Zombie science: A sinister consequence of
evaluating scientific theories purely on the basis of enlightened
self-interest. Medical Hypotheses, 26th July 2008) Charlton debunks the
ideal of impartial and objective science. The following quotations apply
with particular resonance to the current ME/CFS situation in the UK:
"In the real world it looks like most scientists are quite willing to pursue
wrong ideas - so long as they are rewarded for doing so with a better chance
of achieving more grants, publications and status".

"This is 'enlightened self-interest' a powerful factor in scientific
evaluation because the primary criterion of the 'validity' of a theory is
whether or not acting upon it will benefit the career of the scientist;
'enlightened' because the canny career scientist will be looking ahead a few
years in order to prefer that theory which offers the best prospect of
netting the next grant, tenure, promotion or prestigious job opportunity".

"When a new theory is launched, it is unlikely to win converts unless (they)
are rewarded with a greater chance of generous research funding, the
opportunity to publish in prestigious journals and the hope of increased
status exemplified by admiration and respect from other scientists".

"Theories may become popular or even dominant purely because of their
association with immediate incentives and despite their scientific

"Even the most conclusive 'hatchet jobs' done on phoney theories will fail
to kill, or even weaken, them when the phoney theories are backed up with
sufficient economic muscle in the form of funding. Scientists will gravitate
to where the money is so long as the funding stream is sufficiently deep and

"Classical theory has it that a bogus hypothesis will be rejected when it
fails to predict 'reality', but (this) can be deferred almost indefinitely
by the elaboration of secondary hypotheses which then require further
testing (and generates more work for the bogus believers)".

"That the first theory is phoney, and always was phoney, is regarded as
simplistic, crass (and) a sign of lack of sophistication".

"And anyway, there are massive 'sunk costs' associated with the phoney
theory, including the reputations of numerous scientists who are now
successful and powerful on the back of the phoney theory, and who now
control the peer-review process (including the allocation of grants,
publications and jobs)".

"False theories can therefore prove very long-lived".

"The zombification of science (occurs) when science based on phoney theories
is serving a useful but non-scientific purpose (so it is) kept going by
continuous transfusions of cash from those whose interests it serves".

"For example, if a branch of pseudo-science based on a phoney theory is
valuable for political reasons (e.g. to justify government policies) then
real science expires and 'zombie science' evolves".

"(This) can be explained away by yet further phoney theoretical
elaborations, especially when there is monopolistic control of information".

"In a nutshell, zombie science is supported because it is useful propaganda
(and) is deployed in arenas such as political rhetoric, public
administration, management, public relations, marketing and the mass media
generally. Indeed, zombie science often comes across in the mass media as
being more plausible than real science".

"Personal careerist benefits seem easily able to overwhelm the benefits of
trying to establish the 'real world' of truth".

"In current science, there seems to be a greater possibility that large
scale change may be fashion rather than progress, and such change may be
serving propagandist goals rather than advancing scientific understanding".

"Modern science may have a lumbering pace, and its vast bulk means that once
it has begun to move in a particular direction, trying to deflect its path
is like stopping a charging rhinoceros".

"Perhaps funders co-operate, co-ordinate and collude, and therefore should
be regarded as a cartel".

To halt this raging rhinoceros, Charlton says: "Individual ambition should
ensure a sufficient supply of debunkers to keep the gardens of science
weeded of bogus theories, and to banish the zombies of science to the
graveyards where they belong".

The ME/CFS community can have no doubt that Charlton has hit the nail on the

For how much longer must these desperate people be sacrificed on the defiled
altar of zombie science?

Tuesday, August 19, 2008

Antiviral Drug Under FDA Review For ME/CFS

An interesting piece of news I came across on - Original Article

FDA accepts antiviral drug AmpligenR for review as first-ever ME/CFS therapeutic

After 30 years in development and testing, the experimental “antiviral/immune modulatory” drug Ampligen has been accepted by the FDA for review as potentially the first prescription drug approved in the U.S. for treatment of ME/CFS – specifically for certain patients with severe ME/CFS.

Delivered intravenously, typically twice weekly over a year or more, Ampligen (AMPLified GENetic activity) has been available in Belgium and Canada for ME/CFS and HIV treatment since 1996.

Ampligen (polyI:polyC12U) - still allowed only in specific clinical trial settings conducted under U.S. governmental authorization - is termed “a nucleic acid drug,” designed to “modulate” the body’s immune system. Its mechanism of action in ME/CFS “is not entirely clear,” but it is thought to act on two enzyme systems so as to help the immune system destroy viral RNA and speed the death of virus-affected cells. In particular it may “downregulate” an anti-viral pathway which research suggests has become “upregulated” in certain ME/CFS patients (the 2-5 Synthetase/RNase L anti-viral pathway).

The drug’s maker – Philadelphia-based Hemispherx Biopharma, submitted a New Drug Application to the FDA in 2007, and had been asked to answer a series of questions. The FDA’s acceptance of the drug for safety/efficacy review was based on receipt of the requested data. The maker reportedly suggests it is also researching oral delivery of the drug.

A "Who's-Who" of the world’s leading ME/CFS specialists have participated in Ampligen trials over the years

Saturday, August 16, 2008

What Is Fibromaylgia?

(As I'm pretty sure that I mentioned in the previous post I'm pretty bad at explaining illnesses so here's something that explains it better then I could have)

Taken from the Athritis Victoria website

Fibromyalgia is a name given to a group of symptoms marked by generalised pain and muscle stiffness. These symptoms can be felt in all different areas of the body. Extreme fatigue (tiredness) and sleep problems are also common in fibromyalgia. Fibromyalgia does not cause inflammation or damage to the painful areas, but seems to be due to an overactive pain system. Fibromyalgia is different to polymyalgia rheumatica, a type of arthritis that causes inflammation in the muscles.

If you'd like to learn more - symptoms, cause, managment etc - I highly recommend checking out the website. Follow the link at the top of this entry. It's all on the one page.

Wednesday, August 6, 2008

First Post & What Is ME/CFS

I think the first post is always the hardest and I myself always have a hard time starting it so I guess maybe dispensing with the small talk this time round might be best.

I've started this blog as a compliment to the Blue Butterflies Forum. The forum I started over a year ago. It's an alternative get together for sufferer's of ME/CFS & FM. I have had ME/CFS, since 2005, and I'm a bit of an alternative person.

What do I mean by alternative?

Well when it comes down to it I'm an atheist but I like to call myself an open minded atheist. I dabble in a bit of Buddhism, crystal work and other alternative healing, spirituality and paganism. All that jazz is what I mean by "alternative". So if you're a pagan, spiritualist, atheist or just open minded and curious you might like the forum. If it's not your cup of tea then that's fine, you can still read the blog of course!

As for the whole ME/CFS & FM question...

For all my writing skills I'm terrible at explaining exactly what Myalgic Encephalomyelitis or Fibromyalgia (I try to avoid having to explain it) is let alone writing it up so I'm going to take a piece from another site that has it so well written out I am beyond impressed.

This is for the Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). Fibromyalgia will be the next post.

What Is ME/CFS?
Taken from the WA Society Website

ME/CFS is a complex chronic disease affecting multiple body systems/organs. The disease is characterised by abnormal persistent or relapsing fatigue, post-exertional malaise/fatigue, sleep dysfunction, cognitive dysfunction, muscle/joint pain and headaches. Post-exertional malaise/fatigue, which is a hallmark of the disease, describes the worsening of symptoms and incapacitating malaise/fatigue experienced by those affected following physical or mental exertion, sometimes even of a trivial nature.

Individuals may also experience their own unique constellation of accompanying symptoms which may include impaired concentration and memory, swollen lymph nodes, recurrent feverishness, food intolerance, nausea, disorientation and cognitive and sensory overload amongst others (see Symptoms).

The severity of the disease and symptoms vary from one individual to another and can in very rare instances be fatal (see Severity). It is frequently known to develop following infection or may have a more gradual onset and has the potential to cause devastating and possibly lifelong disability in those affected.

Although the disease is generally referred to as ME/CFS, ME and CFS are not identical. To understand the differences between ME and CFS and the confusion and misunderstanding this has caused see Brief History.

If you'd like to learn more please follow this link

Thanks for reading