Stonebird and beyond

So Stonebird is built. Bit by bit it is evolving, taking on a life of its own.

Holding on by my fingertips mostly. Still fighting, I wrote Preposterous Thinking  the other day - and got in right muddle on CoCure over whether it had been published on the BMJ or not. For which I apologize, not least to the BMJ.

You do your  best, sometimes you don't always get it right.

Preposterous Thinking 

Alice Burchfield (2009) a participant in the recent FINE trial, was scathing that the data used about her was misleading; that the trial totally disregarded “ ME as a real illness”; that the program expected her to live a strict pacing regime, yet undergo 3 hour long sessions with the therapists ; and that she crashed after the last session and ended up worse than when she began; that the therapists had “selective hearing” and were “critical” of her and that the whole thing was unethical – presenting the “deconditioning” theory of ME as fact. This is a shocking way to perform a supposedly serious study on ME.

The FINE trail has so predictably and so clearly failed . 

Before the trail began, exsting research warned that patients would be made worse by it and that the gains of CBT and GET were minimal (Kinlon 2009) : exactly the conclusion the FINE trial itself has now reached – at a cost of over one million pounds. As Margaret Williams (2009) stated : There can be no doubt that, for patients with ME/CFS as distinct from those suffering from chronic “fatigue”, neither CBT nor GET is effective, otherwise everyone would by now be cured.” 

I am a Registered Nurse and I am affronted by what has been presented as good nursing practice and purported to be a treatment for people with ME.

Personally I have cared for my wife, who has very severe ME, for almost 17 years now. I cannot begin to describe the horror and the pain and the sheer physical daily torment she experiences.

The FINE trial considered itself suitable to challenge the supposedly  “dysfunctional illness beliefs” of “severely ill” patients, like my wife, on the basis of a single report in the scientific literature of two wheelchair bound patients, who had dramatic improvements in health following a “ pragmatic rehabilitation” regime. “Pragmatic” meaning that treatment is given in people’s own homes , preceded by “qualitative interviews” to explore “patient views on illness causation, beliefs about chronic fatigue, expectations of intervention, and previous experience of treatment and doctor-patient relationships”. 

The preposterous thinking behind FINE, was that patients would begin to understand their symptoms and, jointly with the nurse, agree a programme of rehabilitation.Never mind that ME is a WHO classified neurological disease with devastating multi-system dysfunction and that no treatment has been elicited to aid patient recovery first. In what other disease would rehabilitation be offered as front line treatment without first testing for and treating the illness itself ? 

The 25% Severe ME group and the research charity, ME Research called, way back in 2004, for each severely-ill person on the FINE trial to be given a comprehensive medical assessment to identify physical symptoms and signs. They asked whether or not autonomic disturbances, seizures, frank muscle weakness, neuroendocrine disturbances (like sweating episodes), recurrent flu-like symptoms would be recorded over the course of the trial ? They also asked would symptoms like musculoskeletal pain, neurocognitive problems and sleep dysfunction be comprehensively assessed? 

Critically they asked : will patients receive treatment for any of this? Sadly this did not happen. Invaluable data has therefore been lost.

What a much better use of the wasted £1, 147 000 that would have been !! The question must also be asked how mu time and energy have genuine ME sufferers wasted and how many lives have been made worse and subjected to unnecessary suffering and abuse ?

The tactic of the seemingly all-powerful psychiatric lobby in the UK , whose influence over the MRC seems absolute, is to : ignore neurological ME; to change its name to "CFS", which they consider primarily to be a problem of false perception,and then to reclassify “CFS/ME” as a somatoform disorder (Williams 2009) . 

What no one saw coming, though, was this announcement of failure , so little trust does the ME Community have in the MRC .

Not surprising given the serious problems highlighted in the House of Commons Select Committee on Science and Technology ( HC 132) , which lambasted the MRC for wasting funds and misguided strategies for research. (Hooper 2010).

Also not surprising given the MRC’s total failure to engage with the vast body of significant biomedical evidence about the nature of ME/CFS contained in more that 4,000 published, peer-reviewed research papers, the misleading and contradictory content of the FINE/PACE Trial manuals demonstrating the apparent coercion, and exploitation of patients and the seriously flawed and inadequate science that underpins the Trials as outlined in detail in Professor Hooper’s 442 page report Magical Medicine .(Hooper 2010) 

The failed FINE trial announcement brings into shocking clarity the dreadful misrepresentation of ME as a mental heakth disorder. The FINE trial has so clearly failed to achieve anything except waste valuable time and precious funding .

It is now time that the psychosocial model be discredited, that the psychiatric involvement and interpretation of ME be rejected and a new era of genuine sciebtific research into the biomedical causes underpinning this desolatating neuorological disease be given centre stage ?

Surely now the current practices of the ME clinics around the UK will be overhauled and CBT and GET finally removed to the annals of history , no longer to damage deny and negate the truly dredful physical suffering of tens of thousands of ME patients throughout the UK.

This is medical neglect at its worse; it is time to stop.

References 

Bell D (2009) Daily News online http://bit.ly/4KofDR 

Burchfield A (2009) From Alice Birchfield http://www.investinme.org/Article-015A%20FINE%20Trials- Alice.htm 

Hooper M (2010) LETTER to Dr Morven Roberts, Clinical Trials Manager, UK MEDICAL RESEARCH COUNCIL http://www.investinme.org/Article400%20Magical%20Med icine%20Letter%20to%20Roberts%20MRC.htm 

Hooper M Williams M(2010) Magical Medicine : How to Make a disease disappear http://www.investinme.org/Article400%20Magical%20M edicine.htm

Kinlon T(2009) Why is the 11-item bimodal Chalder Fatigue Scale being used as a primary outcome measure? http : //www.biomedcentral.com/1741-7015/4/9/comments#298590

Kinlon T (2009) Further comments on the outcome measures being used and suggestions for other outcome measures that could be useful in such trials http://www.biomedcentral.com/1741-7015/4/9/comments#298590 

ME Research (2004) Severely Overlooked by Science http://www.meresearch.org.uk/information/publication s/severe1.html 

Williams M (2009) Can the MRC PACE Trial be justified? www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be- justified.htm

Competing interests: None declared