UK: House of Lords: Countess of Mar asks real reason for ME blood ban, 8 Nov

Enid

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Don't know the outcome of this now - the Countess of Mar has been such a long time campaigner (over my 11 years). Just good to see her continuing. Hopefully the time is "riper".
 
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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?"
Yes. this continued circling, asking the same vague questions and getting the same brush off, happens on a regular basis in parliament with regard to ME.
 
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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)
 
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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)
They're all bloomin psychological 'research' projects - apart from Dr Clark & the ethnicity rubbish

UK 6 million (US $9.68 million) spent on the FINE and PACE trials and not a single penny on biomedical research - no bias there then :rolleyes:
 

Bob

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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
Does anyone know if that written answer will be automatically published on some sort of parliamentary website, or would it be a good idea to write to Lord Skelmersdale to find out what the answer is?
 

Bob

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UK government admits concerns regarding XMRV in the blood supply

The answer from the government minister in this video is very significant because the UK government are admitting, for the first time, that the decision to ban ME patients from donating blood was "prompted" by concerns about XMRV...

This is the first time that they have admitted this, as the Countess of Marr remarks... Before now, the only reason that has been given for the blood donation ban was a concern for the health of ME patients (a likely story.)

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 that this quote might be important for us in future campaigning.
 

Bob

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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.
Yes, it was Dr Kerr... there is a quote on him saying that somewhere.

I also read that a specific grant application got a score of: 9, 9, 3... As Mark says, the '3' blocked the grant... and we all know who the '3' was from.
 

Sasha

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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.
 

Bob

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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.
Yes, of course you're right Sasha...
It's a ploy to keep the subject as quiet as possible...
They think that they can get away with this as long as there are no published positive UK studies...
They can say that the virus hasn't been found in the UK...
I'm hoping that they might have to change their tune once the Blood Working Group makes an announcement, and we have some clarity on the sample collecting and processing methodologies.
 

pictureofhealth

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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?"
Couldn't agree more with this Sasha - spot on! I too am greatful that we have someone in the Countess of M's position who can pose questions to the right people. But she has been doing this for ?10 years and the MRC still haven't budged. Unless the MRC funded the Kerr, Bishop etc team's negative XMRV study, then as far as I know, my understanding is that they have spent 0.00 on biomedical research.

To avoid circular answers, which we keep running into year on year, from now on, all questions in/to Parliament must:

1. Be phrased in such as way as to emphasise 'biomedical' research explicitly. (Otherwise ministers will simply come back, as they have done here once again, quoting impressive research investment, but its actually CBT/GET psychology which they have funded - ie. cul de sac number 1.)

2. Cul de sac number 2. Minister responses often pass the buck from Government to MRC and quote 'It is the role of the MRC to fund research into ME' etc etc, but as we all know, in spite of promises this hasn't happened.

Therefore, any and all questions to Parliament re the lack of MRC biomedical research funding, need to be prefaced by a preemptive statement along the lines:

'We all know that the MRC have made biomedical research funding for ME a priority in recent years, but the fact remains that in reality they haven't funded any. Evidence indicates however that they have been more than happy to fund research into the psychology of the illness to the tune of millions.

'Given that the loss to the nation of having 250,000 ME patients homebound and unable to contribute to the economy is now a staggering millions and billions, given that its you the Government and the taxpayer that is in actual fact funding this dismal status quo at the MRC, given that national programmes of CBT/GET which promised to ameliorate this situation have done nothing of the sort, have been a willful waste of taxpayer money and have in fact been a dismal failure in improving the health of patients, and given that this situation is unlikely to change until the MRC makes good on its promise and actually funds novel biomedical research into this condition and into working treatments and cures (have I covered all bases?) - what steps can the Government take to penalise the MRC for their professional ineptitude, laziness, lack of judgement and contribution to the national debt as well as human misery by their inaction ...

" ..and what recourse is there for patients and Governments to introduce legislation which will legally oblige the MRC to fund biomedical research to the tune of billion annually, in order to prevent the current human tragedy becoming a medical and ecomonic disaster of hitherto unimagined proportions? (OK, this is just a first draft, but I'm really p***** off).

"Or does the Right Honourable Gentlemen/Lady agree that the MRC, to all intents and purposes, has become unfit for purpose and should be immediately disbanded and all members barred from holding professional positions in the UK ever again due to their incompetence?"

ps let's not forget that the MRC Council is funded by the Dept of Trade & Industry/Technology ie they are more concerned with commercial gain & oiling the wheels of industry than patient benefit.
However, if they refuse to fund biomedical research, cure patients and get them back to work, these people (us) will NOT be contributing to the profits of UK plc and that should be of concern to MP's. Refusing benefits simply won't make the difference.
 

Enid

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Yes pathetic isn't it - everything psychologically based - everything all these years still to be resisted. CAUSE, CAUSE, CAUSE if any real scientists there.
 

Sasha

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I know, picture, I know! Argh! Yes, let's have some pre-emptive questions. Wish that'd been you in the House (don't suppose there's any chance you're a baroness?).

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.

I think people get the impression from the media that it's easy to get on TV but it's not; and now we've had this latest national opportunity to get our message across about funding and it's gone down the pan, again. Maybe the House of Lords is just too posh for an actual argument.

Look at the trivial dreck that ends up on TV just because someone has caught something on a cameraphone. I'm sorry for that cat that got thrown into that dustbin but what about the quarter of a million of us that have chucked in the dustbin? Why aren't we on TV? Actually, maybe there's a good visual for the next demo. :eek:

Urgh, sorry to rant. Just so hacked off by this. Desperately in need of some good news.
 

pictureofhealth

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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)!

The problem with the MRC being funded by the "Dept for Business, Education and Skills" (I'm sure it will have another name when the next Government arrives!), is that every time some pet UK commercial project goes down the pan and needs bailing out, so does medical research money available for investment. (Actually no idea if it works this way, but sure would explain the lack of funding!)

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. We are unfortunate and expendable 'loss/?lost leaders' (!) for the 'greater good' of the nation's long term benefit/survival. (Love your 'cat in dustbin' comment about this!) Perhaps its the same in the US.

The fact that no one at the MRC seems remotely interested in launching a full scale investigation into the biomedical cause of ME does make me imaginatively creative in this direction I have to say.

ps. 'Countess' does sound pretty good though!
 

Enid

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They will have to now in their own slow pedantic way - change - We have to carry it seems this ignorant lot with us.
 

Bob

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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.
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 (it's now called "Department for Business Innovation & Skills" or "BIS"), 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 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 a letter to my MP now about the MRC, to forward to Vince Cable, for what it's worth.

Ah, I've found the quote, and it's interestingly supportive:

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
And here is identical wording in a letter from Nick Clegg, now the deputy prime minister, in a letter to a constituent, posted on another thread:
http://www.forums.aboutmecfs.org/sh...on-Urgent!-Time-to-remind-Nick-Clegg-about-ME!

With both the Deputy Prime Minister and the Business Secretary both singing the same tune, you'd think that they might be able to get something constructive achieved between them!
 

Sasha

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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)!
That should be enough for us to smuggle you in there and for you to ask a question before your cover gets blown, picture!

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.
If only they had done enough research to establish any kind of cause at all! I think that once we have evidence of cause in the public domain, at least we'll get more research and treatment, whatever the cause. I agree, though, can't see a mass scale-back of modern technology.
 

Sasha

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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.
Just checked (here, on Wikipedia!) and all of the research councils, including the Arts & Humanities Research Council, are funded by the DTI. Utterly strange. Can't make sense of it.

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?
 

Bob

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Worth a go. After all, what's the point of being a minister if you can't make any decisions?
It's worth a go, but they do seem to lose their brains, and their independent decision making capabilities, once they become ministers!

How does one become a Duke or a Countess these days?
I wonder if we could all club together and buy a bit of land somewhere with a hereditary title attached to it?
Or maybe we could all get officially adopted by a sympathetic ageing Duke?
Do they just buy their titles these days by donating large sums of money to political parties?