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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks, urban. I'm glad the Countess got up and asked some questions and I suppose hindsight is a great thing but I wish she'd ask a question that would include anticipating their stupid answers which they keep repeating and so which can be anticipated. Anybody who asks about funding research ought to be saying, "The MRC spent the insulting low sum of 109,000 last year on biomedical research into ME/CFS. Why does the MRC fail utterly to take this disease seriously?"
http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm
Current MRC-funded research projects
The MRC currently supports the following projects relating to CFS/ME (as at 1st July 2010):
Dr P White Queen Mary College, University of London
The PACE trial; A RCT of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome
Recently completed projects
Professor K Bhui Queen Mary College, University of London
Chronic Fatigue & Ethnicity (ended November 2008)
Dr C Clark Queen Mary College, University of London
General and specific risk markers & preventive factors for chronic fatigue and irritable bowel syndromes (ended May 2010)
Professor F H Creed University of Manchester
The feasibility of a population based study of CFS, IBS and CWP (ended June 2007)
Prof R K Morriss University of Liverpool
Exploratory RCT of training General Practitioners to mange patients with persistent Medically Unexplained Symptoms (MUS) (ended December 2005)
Dr A Wearden University of Manchester
Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (ended October 2008)
Lord Skelmersdale asked how much of this research was biological and how much was psychiatric, and was promised a written answer. Hopefully that will illuminate this question soon
8 Nov 2010
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe):
My Lords, this decision by the UK blood services was prompted by a recent independent expert risk assessment of a possible link between a murine retrovirus and CFS/ME.
http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/101108-0001.htm#10110813000455
I think it may have been Dr Kerr who is said to have commented that applications for biomedical research are/were typically given 8/10 and 9/10 by two of the assessors and 3/10 by the psych, and this serves effectively to block them from funding.
Although the risk assessment found no evidence of a link or of a risk to transfusion recipients, the UK blood services
recognised that practice for CFS/ME should be brought in line with other conditions where individuals are permanently excluded from blood donation to protect their own health.
Actually I think another significant bit is this:
Although the risk assessment found no evidence of a link or of a risk to transfusion recipients, the UK blood services
recognised that practice for CFS/ME should be brought in line with other conditions where individuals are permanently excluded from blood donation to protect their own health.
This is flat-out wrong. To say there is debatable evidence is one thing; to say there is none is simply wrong, wrong, wrong.
This makes me so angry.
I'm glad the Countess got up and asked some questions and I suppose hindsight is a great thing but I wish she'd ask a question that would include anticipating their stupid answers which they keep repeating and so which can be anticipated. Anybody who asks about funding research ought to be saying, "The MRC spent the insulting low sum of 109,000 last year on biomedical research into ME/CFS. Why does the MRC fail utterly to take this disease seriously?"
I had no idea that the MRC was funded by the DTI (actually now the Dept for Business, Education and Skills, they're always changing their name; and here it is about the funding source, for anyone else who was equally surprised!). What sort of sense does that make? And yet it's the Minister for Health (Earl Howe) responding to questions about the MRC funding of ME research. Ridiculous.
Vince Cable stated back in 2009 to the Kingston and Richmond M.E Group:
“The Liberal Democrats have long argued that funding and research must be focused on the ‘biomedical’ factors involved and not just simply managing the ‘psychological’ issues. Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The ineffectiveness of the Randomised Controlled Trials is just one weakness. In failing to recognise the biomedical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers. To help address the unique challenges posed by a complex and poorly defined condition like ME, the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.”
http://www.cfstheresistance.com/the-wessely-school-and-nice.php
Sadly not a Baroness Sasha, no - nor a Countess, and not even sure I'm a Lady sometimes, though one or two have accused me of being one on account of my pristine UK accent (only 1/2 kidding)!
Also, think about this - if our illness was in some way caused by business/industrial interests (eg say it did turn out to be inadvertent chemical poisoning, or neurological hypersensitivity to EMF's which are now almost everywhere in the environment, or something vital to the day to day successful operation of the UK), what are the chances that those interests would be reigned back in or scaled back just for the benefit of a few suffering patients - highly unlikely.
It is a bit odd that the MRC is over-seen by the DTI, isn't it...
I don't know why this is the case, but I could hazard a guess that the government want their funding to be less about improving people's health and more about promoting the British science industry.
Vince Cable, as business secretary, is in charge of the DTI at the moment, and he is on record, from before he was in the government, as being sympathetic to people with ME and biomedical research funding for ME. I found a quote by him recently which I think it said that he was keen to get more biomedical funding for ME. The trouble is, once in government, he will only listen to his government advisers. It might be worth writing letters again though, with a new government in place. I am trying to write one to my MP now about the MRC, to forward to Vince, for what it's worth.
Worth a go. After all, what's the point of being a minister if you can't make any decisions?