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University of Bristol: £1.2 million for CFS research

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
£1.2 million for Chronic Fatigue Syndrome research

Press release issued 16 September 2013

Two new research projects that aim to advance treatment for people with Chronic Fatigue Syndrome [CFS] or Myalgic Encephalopathy [ME], which affects an estimated 600,000 adults and children in the UK, have been awarded funding totalling nearly £1.2 million from the National Institute for Health Research [NIHR].

The University of Bristol-led research will help to improve current guidance and treatment through a programme of work investigating treatment and recovery in children with CFS/ME, and a first-of-its kind study to find out how many adults in England are affected by this debilitating condition.

Dr Esther Crawley, Reader in Child Health at the University’s School of Social and Community Medicine, will also conduct a multicentre trial investigating the effectiveness of exercise therapy compared with activity management for mild and moderately affected children.

Dr Crawley, who has been awarded an NIHR Senior Research Fellowship, said: “Paediatric CFS/ME is common and disabling, yet little is known about recovery, whether national guidance on treatment using exercise is helpful, or what treatment strategies might work for children who are severely affected. Results from this study will help us determine how many children recover, how long it will take and which treatments are effective.”

The five-year study entitled ‘Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been awarded NIHR funding of over £864,000.

Dr Simon Collin, Research Fellow also in the School of Social and Community Medicine, will lead the first study of its kind to investigate CFS/ME in primary and secondary care in England. He will use data from the Clinical Practice Research Datalink (CPRD) to obtain an up-to-date estimate of the number of adults diagnosed with CFS/ME by GPs in England. Dr Collin will collect data from NHS specialist services for adults with CFS/ME, document the different approaches to treatment and investigate long-term outcomes.

Dr Collin, who has been awarded an NIHR Post-Doctoral Fellowship, said: “Approximately 9,000 adults are assessed annually by NHS specialist CFS/ME services in England, of whom approximately 80 per cent are diagnosed with CFS/ME. Assessment rates vary six-fold across England with specialist services using a range of treatments with little or no standardisation across the NHS. The extent to which patients recover from their illness and are able to return to normal activity levels are unknown.

“Findings from this study will help with planning and improvement of NHS specialist services for adults with CFS/ME as well as determining the most effective specialist treatment for adults with the condition.”

The three-year study entitled ‘CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services’ has been awarded NIHR funding of £321,861.

Professor Stephen Holgate, Chair of the UK CFS/ME Research Collaborative [UK CMRC], said: “For many years, researchers have struggled to fund studies into this important and yet devastating condition. The CFS/ME Research Collaborative brings researchers and charities together to increase funding in CFS/ME research. These fellowships show that funding bodies will fund high-quality research in CFS/ME.”
 

user9876

Senior Member
Messages
4,556
I find it hard to see how they could really get any results from trawling through GP records as there will be no quality control on treatment, compliance or outcomes. I can see how it works with drugs where there is a simple question around prescribed dose and was it taken but I don't see how it follows for anything else.

I'm not impressed by work they have done thus far on the National Outcomes Data. Given the issues with data and quality control they need to use more robust stats methods than simply quoting the mean.

Dr Crawley, who has been awarded an NIHR Senior Research Fellowship, said: “Paediatric CFS/ME is common and disabling, yet little is known about recovery, whether national guidance on treatment using exercise is helpful, or what treatment strategies might work for children who are severely affected. Results from this study will help us determine how many children recover, how long it will take and which treatments are effective.”

Yet Dr Crawley promises her patients 97% recovery rates even though little in known. I've certainly go the impression she doesn't believe in severe ME.
 
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13,774
No attempt at a placebo control group? Win-win for Crawley, and those making money from cfs, lose-lose for patients.

Better than the Lightning Process? So close that it's within the normal fluctuations of quackery we expect from Crawley?

Stuff like this is one of the reasons I feel bad about pushing for more CFS research funding. Better to let patients with other conditions have more worthwhile research than waste money on Crawley.
 
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13,774
Action for ME statement:

£1.2 million for two new research projects
16 September, 2013
Action for M.E. Chief Executive Sonya Chowdhury today welcomed the news that two new research projects have been awarded funding totaling nearly £1.2 million from the National Institute for Health Research.
The University of Bristol-led research aims to help to improve current guidance and treatment through a programme of work investigating treatment and recovery in children with M.E./CFS, and run a first of its kind study to find out how many adults in England are affected by this debilitating condition.
Dr Esther Crawley, Reader in Child Health at the University’s School of Social and Community Medicine, will also conduct a multi-centre trial investigating the effectiveness of exercise therapy compared with activity management for mild and moderately affected children.
Sonya Chowdhury, Chief Executive of Action for M.E. said, “I am delighted to see any increase in research into this illness. This is a substantial contribution from the NIHR and I welcome this commitment and hope that this research will eventually result in much-needed understanding and knowledge to help improve treatment and support for patients.
“This is a significant step forward in funding, but there is still more to do. We will continue to work collaboratively to redress the inequalities that exist for the many thousands of people affected by this debilitating illness.”
Read the University of Bristol’s media release in full.
Read our other news stories.

http://www.actionforme.org.uk/get-informed/news/your-news/12-million-for-two-new-research-projects

Sonya Chowdhury, Chief Executive of Action for M.E. said, “I am delighted to see any increase in research into this illness. This is a substantial contribution from the NIHR and I welcome this commitment and hope that this research will eventually result in much-needed understanding and knowledge to help improve treatment and support for patients.
“This is a significant step forward in funding, but there is still more to do. We will continue to work collaboratively to redress the inequalities that exist for the many thousands of people affected by this debilitating illness.”

I think that Sonya Chowdhury is genuinely foolish enough to believe this. She seems utterly uninterested in critically assessing anything. If the amount being spent goes up, that must be a good thing! What an achievement Sonya - you must be so proud. I wonder if she'd be capable of citing one example of poorly done CFS research that served to make life worse for patients. I fear that she may not even realise such a thing is possible.
 

Bob

Senior Member
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16,455
Location
England (south coast)
Why is Stephen Holgate quoted? Please tell me that this isn't the first outcome of the UK CFS/ME Research Collaborative, and it's just an unfortunate use of PR by Bristol?

No attempt at a placebo control group?
It doesn't look like it, does it. They're just looking at 'recovery' outcomes in the NHS, and will then ascribe the 'recovery' to either GET or activity management, depending which therapy the 'recovered' patient received.

No money for Rituximab etc, but £864,000 for another bloody subjective GET study?
This whole thing feels like a massive slap in the face for patients, and an appalling use of public funds.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Why is Stephen Holgate quoted? Please tell me that this isn't the first outcome of the UK CFS/ME Research Collaborative, and it's just an unfortunate use of PR by Bristol?

CMRC are not a funding body of course, and no this is not a first effort from them; and yes it is - in respect of your latter point Bob :)
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Why in this day and age do we, the patients suffering from this illness, get no actual day on where huge sums of research money are spent?
I can't imagine there are many of us in the UK who want money wasted on this when it could go to infinitely better use. So frustrating!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Only a couple of comments on their FB item on this, both negative. Scope for putting some more on there.

https://www.facebook.com/photo.php?fbid=10151858735783209&set=a.76870643208.71362.72990583208&type=1

I think there's always room for well-argued points in this sort of thing. Personally I think it comes across better if you write as though you assume that the person on the other end has acted in good faith (I don't know anything about Sonya Chowdhury).

It's worth bearing in mind that AfME seem to have a ton of supporters - that's a lot of our fellow patients who could do with knowing what the issues are.
 

Dolphin

Senior Member
Messages
17,567
Why in this day and age do we, the patients suffering from this illness, get no actual day on where huge sums of research money are spent?
I can't imagine there are many of us in the UK who want money wasted on this when it could go to infinitely better use. So frustrating!

The MRC actually had two rounds of consultations in 2002 when drawing up a research strategy. As I recall, the first round was very restrictive - can't remember the details. Still no evidence that people asked for what was in the draft research strategy. Anyway, lots of people slated the draft research strategy, saying what was needed was more aetiological and pathophysiological research (the draft strategy said these weren't necessary/something all those lines), but all they basically did was use less offensive language in the final strategy. A couple of weeks after the strategy came out, the FINE and PACE Trials came out. It looks to me it was likely pressure came from somewhere to ensure that the research strategy justified supporting the FINE and PACE trials.

The panel itself was somewhat biased: they claimed it would be fresh and independent but actually contained three people, if I recall correctly, who had done some research with the biopsychosocial brigade (two on CFS and one on GWS). Some groups objected to the panel but some others didn't want to rock the boat; also some people had difficulty believing there was going to be bias, it seemed: some people seem to have an (in my mind, unhealthy) trust of establishment/authorities of one sort or another. It was a frustrating time trying to debate with some people.
 

Tuha

Senior Member
Messages
638
Well, I am not from UK but this is really ridiculous. It took more than 1 year to fund from the patients pocket that IiME gut study with the budget of 100 000 pounds. There is no more excuse for those incompetent people.
 

Dolphin

Senior Member
Messages
17,567
Well, I am not from UK but this is really ridiculous. It took more than 1 year to fund from the patients pocket that IiME gut study with the budget of 100 000 pounds. There is no more excuse for those incompetent people.

I agree.

Although I think it's partly inevitable when one has rehab services for ME/CFS esp. ones that are part of the national health service. They're a big part of the problem I think.
 

user9876

Senior Member
Messages
4,556
CMRC are not a funding body of course, and no this is not a first effort from them; and yes it is - in respect of your latter point Bob :)

Holgate says that we need more biological research looking at different molecular causal pathways yet here we have large amounts of research funds being allocated to yet more of the same psychosocial research. From the press release these sound like activities to fill researchers time and get research funds to further their careers rather than any attempt to understand a disease.

We basically have Crawley carrying out an "exercise" study on children with mild and moderate ME but talking up the advice this will give to severe patients in her press release. Given the PACE trials poor results this seems unjustifiable. It would be interesting to see if Crawley repeated her 30-40% recovered error in her research proposal. The protocol will be interesting - will it let her dismiss patients who get worse as having pervasive refusal syndrome and hence up the 'recovery rates'.

The other bit of funding is digging through health records. Without a decent diagnostic system consistently applied by GPs it is hard to see how examining such health records would lead to any results.

Neither will help gain an understanding of potential causal paths let alone help test any hypothesis yet both eat a significant amount of research money. At the same time patients are raising money for a Rituximab trial which will help test a causal pathway and Lipkin is appealing for fund for his work.
 

biophile

Places I'd rather be.
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8,977
Bob said:
This whole thing feels like a massive slap in the face for patients, and an appalling use of public funds.

snowathlete said:
I can't imagine there are many of us in the UK who want money wasted on this when it could go to infinitely better use.

Cue the typical response: "patients demand more funding but complain when it is spent on projects they do not like".

Why should patients be happy when rare funds are poorly allocated. I guess the collaboration think that GET is a promising lead, but as user9876 said it is just a rehash and will tell us nothing about molecular causal pathways, while UK patients have to slowly scrape together funding for promising leads and even Lipkin's projects in USA cannot get enough funding.

snowathlete's avatar, mysterious cities of gold!!! We could certainly use some of that for research funding.
 

Snow Leopard

Hibernating
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5,902
Location
South Australia
The annoying part about these grants is none of these studies are innovative, they are not being conducted in such a way that will give us new information.

I have no problems with funding these sorts of studies, but they must be funded in addition to other worthwhile studies investigating the biological side and secondly, they must be conducted to the highest standard. Specifically, studies of non-pharmacological interventions that do not use objective measures of functioning at the followup intervals (specifically actometers) are of low quality and should not be funded.
 
Messages
13,774
We don't really know the specifics of the Collin one. I'm concerned it will be a fishing expedition though. Given the researchers involved, I have little faith in the work being sensibly done or presented, even if there was the potential for new information to be collected.