Professor Hooper's response to BBC Radio 5 ME programme

Dear Victoria

I rang 5 Live, on Friday July 29th, to join in the debate on ME following the item on Radio 4 that was followed-up on 5 Live. (http://www.bbc.co.uk/iplayer/console/b012nlcv)

I briefly stated my concerns, qualifications, etc; 5 Live phoned back after about 5 minutes but almost immediately I was put on hold with the programme running in the background but no communication from anyone on the programme. After almost 30 minutes I finally had to put the phone down to attend to visitors whom I had kept on hold for your programme. The lack of any contact from anyone on the programme team I found extremely disappointing not to say discourteous.

The programme concentrated on the sensational claims that death threats and warnings had been issued against some psychiatrists who carried out research into CFS but no objective evidence was presented, only the impression of one participant, paediatrician Dr Esther Crawley.

These alleged threats and warnings actions were described as the abuse of scientists.

However, nothing was mentioned about the abuse of patients by these psychiatrists and others who promulgate the view that CFS/ME is a mental and behavioural disorder in defiance of the WHO classification of the illness, for example, sick patients sectioned under the mental health act and confined to locked wards,
children and young people forcibly separated from their parents, and parents accused of Munchausen's-Syndrome by Proxy.

The evidence is in the public domain, http://www.sophiaandme.org.uk/ with full medical records for Sophia Mirza, http://www.sophiaandme.org.uk/documents%20index.html . Ean Proctor’s story describes positively medieval actions that have more in keeping with the Inquisition than modern medicine (see “Skewed” by Martin Walker ISBN0-9519646 and “Denigration by Design” by Margaret Williams who also describes the case of Child X and Wessely’s role in the story, http://www.meactionuk.org.uk/Denigrationbydesign.pdf See also “Voices from the Shadows”, a recently issued trailer for a DVD that tells the story of very sick ME patients.

The vested interest of many psychiatrists dealing with ME/CFS who are deeply involved with the insurance industry was exposed in the Gibson Parliamentarian’s report that asked for an investigation of these links. Nothing has been done to investigate this unsatisfactory situation. Consequently, the false diagnosis of ME/CFS as a mental illness has resulted in sick patients being denied financial support and benefits, a matter of great concern following the introduction of new benefits legislation.

The recently published International Classification of ME, July 2011, was ignored. One member of the international team was Dr Nigel Speight, a paediatrician specialising in ME who has been involved in many cases where compulsion and abuse by doctors required legal intervention.

The cardinal feature of ME, post-exertional malaise (post-exertional neuroimmune exhaustion), was not mentioned by anyone in either programme, rather the word fatigue was used misleadingly to describe ME. The numerous and well documented clinical signs (neurological, cardiovascular, endcrinological and immunological) were not mentioned. Nor were the deaths arising from ME, especially that of Brynmor John MP who collapsed and died following prescribed/advised physical exercise.

There was no mention of the effective treatments of ME reported in the biomedical literature (some 5000 papers) that have been repeatedly ignored by Professor Wessely and his followers.

If the adverse, even vilifying, attack on people with ME is to be broadcast as fact and the science of the illness ignored, the BBC should at least properly research any programme before it is put out. In the interests of natural justice and transparency, so beloved of our politicians and organisations such as the GMC and NICE, then the whole story must be told.

We have recently called for the retraction of the PACE trial study published in the Lancet and await a response to our detailed criticism of this paper that is a travesty of science, a tragedy for patients, and is tantamount to fraud. Good science is being denied/ignored in order to promulgate the unsustainable psychiatric view of ME.

Please accept this letter as one of complaint for a very biased and uninformed programme and please act accordingly to put the facts of this complex, chronic and debilitating illness in the public domain in a programme worthy of the BBC.

Malcolm Hooper
2, Nursery Close
Sunderland SR3 1PA
01915285536
for more information/writings see www.meactionuk.org.uk
Permission to repost.

See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: World exclusive: the full text of the death threat to Prof Simon Wessely
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise