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ME ACTION's analysis of Minister's Caroline Dinenage's response to Carol Monaghan MP PACE debate

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https://www.meaction.net/2018/02/26...pace-trial-and-its-effects-on-people-with-me/





WESTMINSTER HALL DEBATE ON THE PACE TRIAL AND ITS EFFECTS ON PEOPLE WITH ME
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Categories: Awareness, Featured news, Politics, United Kingdom
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Westminster Hall Debate on the PACE trial and its effects on people with ME:
an analysis of the response from Caroline Dinenage MP, Minster of State for Care

On the 20 February 2018 a debate was held in the Palace of Westminster (UK) on the PACE trial and its effects on people with ME. (See #MEAction summary.)

Carol Monaghan MP, who secured the debate, raised many valid and important concerns, as did several MPs who intervened during her speech. This article, however, is concerned only with analysing the comments made by Caroline Dinenage MP, the minister who was assigned to speak on behalf of the Department for Health and Social Care (DHSC).

The full transcript of everything that the minister other MPs said during the debate is available from Hansard. There is also a video of the 30 minute debate on parliamentlive.tv.

Selected quotes from Caroline Dinenage, and analysis:
“As we have heard, chronic fatigue syndrome, also known as myalgic encephalomyelitis or encephalopathy, is a debilitating and very poorly understood condition, which is estimated to affect more than 200,000 people in England.”

It was notable that during the debate Carol Monaghan consistently referred to ME (myalgic encephalomyelitis) not chronic fatigue syndrome, observing that “labels such as chronic fatigue syndrome or post-viral fatigue syndrome simply do not come close to the living hell experienced by many ME sufferers”. It was therefore disappointing that the minister chose to refer to the illness primarily as chronic fatigue syndrome, and later as CFS/ME (see further comment below).

It was interesting to hear that the DHSC estimates that the number of people affected by ME/CFS in England is more than 200,000. In 2013, Professor Sir John Savill, Chief Executive of the Medical Research Council (MRC) sent a letter to Francis Maude MP, in which he stated that there were fewer than 20,000 (twenty thousand) people in the UK with a diagnosis of “CFS/ME or Post Viral Fatigue Syndrome (PVFS)” [1]. This low estimate of the disease burden was used to partly justify the low levels of funding for biomedical ME research by the MRC. It is unclear whether the MRC acknowledges that this was an error. No clarification or apology has been issued, and there has been no increase in investment in biomedical research or ringfencing of funds to compensate for the apparent miscalculation.

It was also notable that the minister referred only to the estimated number of people affected in England, with no mention of the other parts of the UK. This was surprising given that the MP who secured the debate represents a Scottish constituency.

“The condition, which for brevity and to avoid covering you in a thin layer of spittle, Mr Hollobone, I shall refer to in the abbreviated form CFS/ME, can stop a life in its tracks, leaving sufferers unable to carry out the most basic tasks.”

No patients or patient groups refer to the illness as CFS/ME. The preferred term among patients and charities is ME. The term CFS/ME was used by the PACE authors. It was also adopted by the CFS/ME Research Collaborative (CMRC) at the request of Professor Sir Simon Wessely and Professor Peter White (lead investigator of the PACE trial), against the wishes of all of the charities involved (Action for ME, The ME Association and ME Research UK) [2].

“In the most serious cases, people can be bedbound for weeks at a time.”