Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

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Action for M.E. - the UK's largest CFS/ME charity - launched a new research strategy in November based on the priorities identified by patients. We asked the Charity's Chief Executive, Sonya Chowdhury, about the new strategy and also about the commitment to greater patient involvement. By Russell Fleming and Simon McGrath.


Sonya Chowdhury, CEO, Action for M.E.
Charities have always connected with patients - many were founded by patients and are supported with patient help, but few have tried to give patients a voice when it comes to decision making.

Action for M.E. is working to do just that, a task made far more practical by the internet: consultation has never been so easy, so fast or so cheap.

At its Research Conference held at the beginning of November, Sonya Chowdhury the Chief Executive, announced a new research strategy, and what made it different, unique even, was that its' priorities had all been determined by patients.



The New Research Strategy

The new strategy is summarised in the graphic below and is perhaps worth taking some time to consider:




Action for M.E.
Research Priority Survey Results - June 2013; click to view pdf
The priorities and themes were drawn from the top 5 patient priorities - determined by consulting the community through a survey in June, which attracted the views of 1,000 people (900 of whom had M.E.). Together, these 5 priorities won 85% of patient first-choice votes:
  1. Disease Processes and causes (underlying pathology)
  2. Better Treatments
  3. Better Diagnosis
  4. Clinical course of ME, outcomes and prognosis (Epidemiology)
  5. Severely Affected patients
To which Action for M.E. has added Prevention, Genetics and Genomics, and Biomarkers, and I doubt many would quibble with those choices.

Two promises worth highlighting are, that:

“We will fund biomedical pilot studies to stimulate mainstream funding and will develop a programme of work with others to initiate and support social policy research to support our informing and influencing work”

and

“We will partner with patients and researchers to support patient participation and keep patient voice and the heart of research”

Committed to consultation

The patient survey served to also inform the Executive Board of the UK CFS/ME Research Collaborative which had initially sought patient feedback. However, this canvassing of opinion, is not to be seen as a one-off exercise, as Sonya was quick to explain:


“We will do the same again when we set any new strategy, but that’s not to say that we wouldn’t do something sooner if there was need or something changes significantly. There has to be a level of flexibility and agility in all of our strategies and policies.

We will, however, continue to pursue our commitment to patient engagement, to participation and to giving patient's a voice, and we will ensure that we listen on many different levels, for example through discussion threads, questions on Facebook and more surveys.

We have a list of ideas from various discussions we've already had such as establishing a patient reference group, focus groups (actual and virtual), and more regular consultations.”

We asked Sonya some more about the new strategy, the charity's approach to research and what consulting patients might actually mean in practice:

What do you see as the most important thing(s) in the new research strategy? And why?

“I strongly believe in the need for personalised medicine and anything that helps us get to that point has to be of importance. If I had to pick two promises, or core values that underpin the strategy, these would be collaboration and participation.

I have a background in children’s rights and ensuring meaningful engagement/participation and I fundamentally believe that you achieve the best possible outcomes by working with the people that you work on behalf of.

This isn’t an optional extra; meaningful engagement and consultation with our supporting members and others, such as other M.E. charities and patient groups, has to be inherent in our work.

I also believe that we have to work collaboratively if we are to achieve the level of transformation needed for people affected by ME/CFS. That includes people with whom we may have differing views as long as we can find some common ground that is in service of achieving positive change.”

Several of the patient-determined priorities have been talked about for a long time now, for example the need to focus on severe patients, epidemiology, and biomarkers. Why do you think it has it taken so long to act upon them? And how do you think highlighting them again in this way will make a difference?

“Action for M.E. has funded work in these areas and the UK ME/CFS Biobank that we’re co-funding is collating samples including from people who are more severely affected. However, there is still a significant gap and we must increase our focus on this.

It is not right that people with M.E. are so severely disadvantaged and that there is an imbalance in mainstream funding for research. It’s even worse that we have those who are more severely affected receiving less of a focus with limited or no services and a dearth of research.

You don’t really find that with other illnesses. A researcher once described people in this group as ‘severely affected, severely neglected’. It’s unjust and therefore we have to continue not only highlighting them, but work with others to turn this into action by securing more money and more research.”

Does this strategy represent a change in direction for Action for M.E. in terms of research funding and if so, in what way? For example, your website mentions 'biomedical', is this now the sole determinant for qualification, to the exclusion of, say, psychological research which came last in your survey as a first choice for patients?

“Our recent funding has been used for biomedical research and so this isn’t a change of direction. What we have sought to do is to be explicit about what we do and how we do it.

There is such a momentum at present within the research field and therefore it is right to review our position and work in this area. We are also continuing our commitment to being more transparent about our work.

Our assessment for which research projects we will fund, partner and/or support is focused on, “how might this benefit people with M.E.?” and you can read our assessment criteria for partnering requests.

We should never rule anything out if there is a strong case for supporting a project, but our focus currently is on biomedical research projects.”

Action for M.E. is currently funding the following CFS/ME research projects:

Action for M.E. 2013 Call for Research Proposals

Research Fortnight

Advertisement Nov. 28, 2013

“Action for M.E. offers research grants
Action for M.E. is calling for applications for its pilot research grants; £60,000 is available for up to three projects. Applications should focus on underlying chronic changes related to M.E./CFS, particularly focusing on post-exertional fatigue, autonomic dysfunction, immune dysregulation, phenotyping, epidemiology and severe M.E.”
Research Fortnight, p 10.
How will you be actively seeking research projects and promoting CFS/ME as an exciting area of interest?

“We have circulated our 'Call for Proposals' as widely as possible across our network of researchers and universities as well as through social media and our Online M.E. Centre.

I have already had discussions with a number of researchers interested in submitting applications including some who are at present outside the CFS/ME field.

There are many things that make CFS/ME an exciting area of interest. Not only do you have the technological and social advances that are benefiting research more widely, but there is increasing collaboration in this field with many new discoveries yet to be made, and there is the opportunity to make a significant difference.

True, the same can be said for a number of other illness areas. However, when I talk to researchers who have recently started working in the CFS/ME field, the thing that many say is different is the higher level of patient engagement, and the commitment and passion to work in a meaningful way with researchers.”

Why do you think there remains a need for small, and potentially fragmented 'pilot' studies when the field is dominated by such research dating back 50 years? Isn't it time we looked to more significant, larger, and better defined research, that includes perhaps the replication of existing research?

“We would love to be in a position to fund larger projects but we’re not. We are not just a research charity and also need funds to deliver services which provide information and support to more than 300,000 people.

We also believe that CFS/ME research is a priority, given the injustice, ignorance and neglect that exists and therefore larger research projects should have mainstream funding.

Our role is to add to, or complement mainstream funding through investing in feasibility studies and so forth. It is essential, though, that there is better collaboration between researchers so that the potential benefit from pilot projects is realised.”
Sonya on winning patients' trust
“It’s now 14 months since I came into post... and what a rollercoaster ride it’s been. At our Research Conference and AGM a couple of weeks ago, I reflected back on my first few months, and commented on how shell-shocked I think I was.
I hadn’t anticipated the level of fragmentation, frustration and anger that existed, much of it understandable given the ignorance, inequalities and actual discrimination that I also saw and heard about.
BUT... I was, and still continue to be, incredibly touched by the passion, the sheer determination and commitment that many people were taking to create the level of change that is so desperately needed.
Over the past year, I have had to front up to criticism and significant challenges to what we have said or done, both past and present. I have also received tremendous praise for things we have done, are doing and plan to do.
It is absolutely right that as a patient charity, we, and me personally, are held to account by our supporting members.
We are working hard to ensure that we engage with people affected by M.E. in a meaningful way to inform our work and to help ensure we continue to do better.
This is set out, in the form of ‘our promises’, in our Statement of Strategic Intent that we launched in May.”
I couldn't help but notice that Professor Stephen Holgate is a member of your Research Panel. Was this a recent appointment and what role does he play?

“Stephen has been a member of our Research Panel since it was launched in January 2012. He plays a significant role in the Panel and has contributed to all of our meetings and discussions.

The Panel, which also features three supporting members chosen by their peers, reports to the Board and oversees our research work as well as helping set the strategy, identify which projects to fund and/or partner and helps to ensure accountability for the funding that we invest.

Personally, I find Stephen incredibly supportive as a sounding-board and in offering guidance. We have a strong Research Panel and Stephen is very much a part of this.”

Involving patients appears then to be a continuing focus for your work, so what's the next step for the strategy and for continuing patient participation?

“We want to discover what our supporting members and others think about where we’ve got to and develop our plan to put this strategy into action.

We are also keen to hear how we can further engage with our supporting members and people affected by M.E. to inform our research work.

So, if anyone reading this has any views, thoughts, ideas or questions, please do contact Action for M.E., or you contact me direct.

We can always do better but I hope we are making good progress on really listening, responding and acting on what our supporting members and others affected by M.E. have to say.”


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Comments

I've never actually seen it... for my 'to do' list!
 
Speaking as someone who wasn't really opposed to PACE when it was first proposed, but has been utterly disgusted by the way in which results have been spun since, I don't think that their involvement was a problem, so much as their refusal to use their status as an insider to actually represent patient interests, ensure that important data was collected, and ensure that results were presented in a reasonable manner.

The specifics of their involvement with PACE are far more of the problem than the fact that they were foolish enough to get involved in the first place imo (admittedly, I do feel somewhat foolish myself for not being more cynical about PACE from the get go).
I emailed AfME with a critique of the first PACE paper soon after it was published. I don't think I ever had a reply. I think it was months later that they published a critique in their magazine InterAction, which I think was fairly good.
 
I've never actually seen it... for my 'to do' list!
I wonder whether @Leopardtail means this programme. Channel 5 is not renowned for being particularly highbrow, but a few programmes are exceptions. We do need to educate all sectors of the population about ME, so no harm in trying that one, as long as it doesn't spin things the wrong way.
 
If CBT is targetted at discarding thought processes that waste energy it can do a lot of good. It it is targeted at removing the constant guilt that people with ME are encouraged to feel it can do a great deal of good. Likewise learning to pace physical activity in order to increase energy rather than reduce it can also do a great deal of good.
Presumably you know that the type of CBT used with GET doesn't do what you refer to above. It tells people to forget what they have learned from experience, to stop associating exertion with PEM, etc., although I believe there are changes afoot to make it more sensible...along the lines of what most of us know already.

What's this 'constant guilt'? I know that some ME sufferers feel this, but I don't. Why should I? I only feel guilt when I have done something wrong!
 
What's this 'constant guilt'? I know that some ME sufferers feel this, but I don't. Why should I? I only feel guilt when I have done something wrong!
Of course we shouldn't feel guilty for being ill, and we shouldn't feel guilty for needing help from other people. But society is set up in such a way to make us feel guilty.
The government, health-services, therapies, families, neighbours, the media, the benefits system can all contribute to making us feel inadequate at times.
We receive constant messages throughout our lives that we should all be independent and not a 'drain' on society, etc.
This is nonsense, of course, because no one can survive without the support of others, and everybody contributes to society in different ways. (The quietest people often adding most value.)
Those with a lot of money and a platform from which to promote their opinions (e.g. newspaper owners and politicians), find it easy to point fingers at those who don't have equal resources to make their voices heard.
Personally, I find it a constant battle to fight all the messages constantly coming at me from many directions.
I sometimes feel like i'm in a constant battle, not just with my illness, but with society.

So we shouldn't feel guilt, and we have nothing to feel guilty about, but if you never feel any guilt at all, then you're doing a lot better than I am.
 
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http://carersfight.blogspot.co.uk/2010/03/16-good-reasons-to-be-very-suspicious.html

16 Good Reasons to be very suspicious of Action for ME.

Includes:

4.


Margaret Williams

Action for ME: the other main UK patients' charity, Action for ME (AfME), has had a chequered history. In September 1993 it changed its name and logo to "Action for ME and Chronic Fatigue". Complaints were made to the Charity Commission and the charity subsequently dropped "Chronic Fatigue". On 24th July 2003, in a statement approved by its Council of Management, the charity announced that it is funded by the Department of Health.

Psychiatrist Michael Sharpe (infamous for his "undeserving sick" comment quoted above) is one of its medical advisers, though his name does not appear on the charity literature. It is well-known that in UnumProvident's Chief Medical Officer's Report (Trends in Disability, December 2002) Sharpe wrote: "Functional symptoms are not going to go away. Privatised doctors will collude with the patient's views that they have a disabling and permanent disease. An increase in insurance claims is to be therefore anticipated. It will be imperative that social policy addresses this problem. This will not be easy. However, there are glimmers of progress. One of the major patient charities, Action for ME, is aligning itself with a more evidence-based approach. If this convergence of rehabilitation-orientated clinicians and a patient's advocacy group is successful, there could be very positive implications for insurers".

This liaison is encapsulated in the statement by Lord Turnberg (the former Sir Leslie Turnberg, President of The Royal College of Physicians): "The largest patients' charity, Action for ME, is working closely with Wessely and his colleagues on new research initiatives funded by the MRC and the NHS" (Hansard [Lords]: 22nd January 2004: Vol 656: No. 27:1186). It was under the auspices of Turnberg that the biased and highly flawed 1996 Joint Royal Colleges' Report CR54 on "CFS" was produced with his full support (see below).

Professor Anthony Pinching is currently AfME's Principal Medical Adviser. He is lead adviser on "CFS/ME" to the Department of Health and was responsible for allocating the £8.5 million grant from Government for the new "CFS" Centres that deliver only psychotherapy. His views on "CFS/ME" were set out in his article in Prescribers' Journal in 2000:40:2:99-106, published when he was Deputy Chair of the Chief Medical Officer's Working Group on "CFS/ME" ("CFS is not related to on-going exertion"; "the Oxford criteria are too narrow for clinical use"; "over-investigation can [cause patients] to seek abnormal test results to validate their illness"; "complementary therapists sometimes introduce or reinforce unhelpful illness beliefs"; "the essence of treatment is activity management and graded rehabilitation").

In March 2001 AfME produced an excellent report, Severely Neglected: M.E. in the UK. This report was the result of a membership survey of 2,338 respondents, making it the biggest survey ever done on ME in the UK. Its confidential Preliminary Report of 28th February 2001 stated: "graded exercise was reported to be the treatment that had made most people worse" but in the published version, this was changed to reporting that graded exercise made 50% of respondents worse. This makes it all the more surprising that AfME "is working closely with Wessely and his colleagues on research initiatives funded by the MRC and the NHS" when those "initiatives" are based on graded exercise.

AfME's report found that 77% of respondents experienced severe pain because of ME; nearly two out of three had received no advice from their GP on managing the illness; 70% were either never able, or were sometimes too unwell to attend a doctor's clinic; 80% of those who were bedridden by ME reported that a request for a home visit by a doctor had been refused, and that many people did not receive State benefits to which they were clearly entitled and desperately needed in order to survive.

By aligning itself with the Wessely School, who have a 20 year published track record of denigrating patients with ME, AfME has done patients with ME a massive disservice and may well have devalued the charity's own important report.

Michael Sharpe has a similar published track record to that of Wessely: he asserts that in "CFS/ME", personality factors have been shown to perpetuate disability; that no immunological, virological or nuclear imaging tests should be carried out on such patients; that "the label of CFS avoids the connotations of pseudo-diagnoses such as ME"; that "change in belief is an important factor in recovery"; that psychosocial factors are important in "CFS"; that his own view has long been "the issues around CFS/ME are the same as those surrounding (patients) who suffer conditions that are not dignified by the presence of what we call disease".
 
Of course we shouldn't feel guilt for being ill, and we shouldn't feel guilty for needing help from other people. But society is set up in such a way to make us feel guilty.
The government, health-services, therapies, families, neighbours, the media, the benefits system can all contribute to making us feel inadequate.
We receive constant messages throughout our lives that we should all be independent and not a 'drain' on society, etc.
This is nonsense, of course, because no one can survive without the support of others, and everybody contributes to society in different ways.
Those with a lot of money and a platform from which to promote their opinions (e.g. newspaper owners and politicians), find it easy to point fingers at those who don't have equal resources to make their voices heard.
Personally, I find it a constant battle to fight all the messages constantly coming at me from many directions.
I feel like i'm in a constant battle, not just with my illness, but with society.
So we shouldn't feel guilt, and we have nothing to feel guilty about, but if you never feel any guilt at all, then you're doing a lot better than I am.

We have nothing to feel guilty about, and we are valuable members of society, and we are wonderful individuals in many ways. But it doesn't always feel like it.
Most of my guilt stemmed originally from the feeling that I was not being believed. And an enormous amount from simply being unable to work. The two compounded each other and dragged me down many times. I would think 'maybe I am not ill so let's get back to work and give it another try' and then 'fail' and feel even worse. Yeah it is guilt. It is guilt BIG TIME. I could go on but I won't. Those who don't feel the guilt are I think lucky. I still do even today but not to the extent that I did. Hell of a road to travel. Hell of a road.
 
Of course we shouldn't feel guilt for being ill, and we shouldn't feel guilty for needing help from other people. But society is set up in such a way to make us feel guilty.
The government, health-services, therapies, families, neighbours, the media, the benefits system can all contribute to making us feel inadequate.
We receive constant messages throughout our lives that we should all be independent and not a 'drain' on society, etc.
This is nonsense, of course, because no one can survive without the support of others, and everybody contributes to society in different ways.
Those with a lot of money and a platform from which to promote their opinions (e.g. newspaper owners and politicians), find it easy to point fingers at those who don't have equal resources to make their voices heard.
Personally, I find it a constant battle to fight all the messages constantly coming at me from many directions.
I feel like i'm in a constant battle, not just with my illness, but with society.
So we shouldn't feel guilt, and we have nothing to feel guilty about, but if you never feel any guilt at all, then you're doing a lot better than I am.

We have nothing to feel guilty about, and we are valuable members of society, and we are wonderful individuals in many ways. But it doesn't always feel like it.
I guess I had 'good' training in not internalising unjust attitudes, having been on the receiving end of these from my parents for as long as I can remember. I knew that it was unjust, and my feelings were of injustice and outrage, as they still are, both on my own behalf and on behalf of others who are treated unjustly. I knew that I was not, and did not do, all the bad things that were attributed to me.

Yes, early in my illness I was unsure whether I was genuinely disabled and whether I just needed to try harder to do things, partly as a result of all the false information around and the way I was treated, but as I learned more, most of the guilt turned to that familiar feeling of injustice, and such feelings are amply expressed on Phoenix Rising and other ME forums.

Yes - I occasionally feel a little guilty - but usually more regretful than guilty - when I cannot do things quickly, and hold people up, or when I have to disappoint someone, but guilt is far from 'constant'. I know that I do a lot more useful stuff than many people in paid work - indeed I have always felt a need to do this. Rather than feeling guilty I channel negative feelings into positive action. I know this is hard for severely-affected people and those obliged to continue with exhausting work and care for dependents.

Yes, we are in a constant battle, which most of us fight bravely.

It's the expression 'constant guilt' apparently attributed to most or all of us that I take issue with.
 
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Presumably you know that the type of CBT used with GET doesn't do what you refer to above. It tells people to forget what they have learned from experience, to stop associating exertion with PEM, etc., although I believe there are changes afoot to make it more sensible...along the lines of what most of us know already.

What's this 'constant guilt'? I know that some ME sufferers feel this, but I don't. Why should I? I only feel guilt when I have done something wrong!
Many people who get ME very young find that they are regarded as lazy rather than ill - it has a profound effect in relationships. The CBT when delivered the right way concerns itself with shrugging off unreasonable expectations that are founded in ignorance, not trying to explain yourself etc. My comment was about those around an ME patient 'encouraging' this feeling. For example by demanding equal levels of activity/workload complaining about 'fairness'. For some the very long time to diagnosis can cause entrenched attitudes in family that do not change with diagnosis. That was my personal experience.

Yes I am aware that the wrong form of CBT is usually given and that it's profoundly harmful. I was lucky to have received the more helpful form of CBT due to not having been diagnosed with ME at the time.
 
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I wonder whether @Leopardtail means this programme. Channel 5 is not renowned for being particularly highbrow, but a few programmes are exceptions. We do need to educate all sectors of the population about ME, so no harm in trying that one, as long as it doesn't spin things the wrong way.
I wouldn't describe it as 'highbrow' but it is brighter than the average chat show. It does also tend to present mixed views of any topic. The previous program some years ago was the only balanced program I have ever seen on ME.

Given that medics are determined not to be objective, its seems to me that we need a route to 'Jo Public' in order to generate demand for change.
 
I have seen a few references to the PACE trial amongst the comments here and information on the current/upcoming policy from AfME.
There are a few positive and pro-active points I would like to make:
  • I agree that governance MUST be improved in all projects - a project should do what it is funded to do in the way it agreed to do it.
  • The diagnosis/identification of ME as distinct from CFS as distinct from Chronic Idiopathic Fatigue before any more projects at all are funded in Britain as least and preferably our major partners should be using one definition.
  • The criteria used need to be tested statistically on a large body of patients with ME and compared for accuracy with suitable other diesease for comparison. This would rule out criteria that pollute research populations with others diseases.
  • We also need criteria of similar rigour to provide a common method of assessing severity of the symptom group being tested and clear defintions of what constitutes mild/moderate/severe - without this results are not comparable.
  • I know the above would not be to the taste of some researchers, but that's just tough, we don't need more funds wasted on trials of PACE quality that then go on to cause us harm.
  • I would be acceptable for projects to ADD domain specific requirements (e.g. bowels problems) common criteria used throughout ME are needed in each domain.
  • We need all results tabulated (at a minimum) by disease severity - this allows us to determine who it might help/harm and to start gaining insight into disease process.
  • For research into treatment grouping of results by Neutral Effect, Positive Effect and Negative Effect needs to be mandatory for publication and or funding. This prevents distortion by grouping neutral with another group.
  • For research into biochemistry, grouping by Optimal, sub-optimal, super-optimal, high and low is need - results in Me are often subtle hence some precision and commonality are needed.
  • All such reporting must be repeated in way that prevent annuals cycles messing up results.
These measures amount to simple scientific rigour that is unacceptably lacking in ME research. Researchers in Diabetes manage some degree of consistency in reporting that we should demand loudly and eloquently. We may well need to put researched funding into resolving this issues, but that will improve all subsequent research. Irrespective of who funds our research a common and high standard of governance is needed by act of Parliament if needed.
 
The most important point you make there is one that can be applied to all research into ALL psychology., Leopardtail!

For research into treatment grouping of results by Neutral Effect, Positive Effect and Negative Effect needs to be mandatory for publication and or funding. This prevents distortion by grouping neutral with another group.

They don't know what their results mean because they never, ever take the neutral response to be a response!

In a living system, no response IS a response.
That's why computer models will never, ever be able to simulate the reality of the brain and have been on a hiding to nothing from the start. They are binary.

Goiung back over years and years of reading psychology papers, and going right back to Milgram's seminal paper,
it is amazing how many results are split 66:34.
Milgrams subjects were.

But nobody ever considered that there were 3 responses.
Unquestioning adherance to authority. -ve
Doubting authority, but allowing authority to overrule conscience. neutral
Allowing doubts to overrule authority and go with conscience. +ve
 
I have seen a few references to the PACE trial amongst the comments here and information on the current/upcoming policy from AfME.
There are a few positive and pro-active points I would like to make:
  • I agree that governance MUST be improved in all projects - a project should do what it is funded to do in the way it agreed to do it.
  • The diagnosis/identification of ME as distinct from CFS as distinct from Chronic Idiopathic Fatigue before any more projects at all are funded in Britain as least and preferably our major partners should be using one definition.
  • The criteria used need to be tested statistically on a large body of patients with ME and compared for accuracy with suitable other diesease for comparison. This would rule out criteria that pollute research populations with others diseases.
  • We also need criteria of similar rigour to provide a common method of assessing severity of the symptom group being tested and clear defintions of what constitutes mild/moderate/severe - without this results are not comparable.
  • I know the above would not be to the taste of some researchers, but that's just tough, we don't need more funds wasted on trials of PACE quality that then go on to cause us harm.
  • I would be acceptable for projects to ADD domain specific requirements (e.g. bowels problems) common criteria used throughout ME are needed in each domain.
  • We need all results tabulated (at a minimum) by disease severity - this allows us to determine who it might help/harm and to start gaining insight into disease process.
  • For research into treatment grouping of results by Neutral Effect, Positive Effect and Negative Effect needs to be mandatory for publication and or funding. This prevents distortion by grouping neutral with another group.
  • For research into biochemistry, grouping by Optimal, sub-optimal, super-optimal, high and low is need - results in Me are often subtle hence some precision and commonality are needed.
  • All such reporting must be repeated in way that prevent annuals cycles messing up results.
These measures amount to simple scientific rigour that is unacceptably lacking in ME research. Researchers in Diabetes manage some degree of consistency in reporting that we should demand loudly and eloquently. We may well need to put researched funding into resolving this issues, but that will improve all subsequent research. Irrespective of who funds our research a common and high standard of governance is needed by act of Parliament if needed.

Unfortunately, Prof White (who also works for Swiss Re and the DWP) of the £5m PACE trial is now undertaking another trial of graded exercise, GETSET

http://www.controlled-trials.com/ISRCTN22975026/

Where is AfME's condemnation of more waste of public funds?
 
Unfortunately, Prof White (who also works for Swiss Re and the DWP) of the £5m PACE trial is now undertaking another trial of graded exercise, GETSET

http://www.controlled-trials.com/ISRCTN22975026/

Where is AfME's condemnation of more waste of public funds?
There are obvious flaw in the design of this trial:
  • This trial may distort placebo response. Standard medical care for ME is essentially little care at all meaning low expectations of placebo response. GET/CBT like it or hate it involves 'personal attention' and should involve 'supportive personal contact' this means placebo should be higher in this group. For any such trial to be valid the 'placebo' has to be as convincing and reassuring as the primary treatment under assessment.
  • A proportion of ME patients improve throughout summer hence if there are improvements relative to placebo they may be 'dead and gone' the following spring any such trial needs to monitor at start, at end, and one full year from each of start and end to deliver real data.

Who is funding this study Min?
 
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GETSET funding is by theNational Institute for Health Research (NIHR) (UK). Anyone know how much this new ( or same tired old) stick to beat UK myalgic encephalomyelitis patients with is costing?
 
A passing thought just occurred to me, has anybody here had experience of the form of CBT that encourages one to 'monitor thought processes' and discard the ones that waste energy? That particular form has no element of 'you can think your symptoms away'
 
GETSET funding is by theNational Institute for Health Research (NIHR) (UK). Anyone know how much this new ( or same tired old) stick to beat UK myalgic encephalomyelitis patients with is costing?
I just checked their website, it is the research arm of the NHS. In other words having dealt with one biased funding source we pay for (the MRC) we are now paying for another. This looks very much like an attempt to make the patient responsible for GET and do it on the cheap.
 
GETSET funding is by theNational Institute for Health Research (NIHR) (UK). Anyone know how much this new ( or same tired old) stick to beat UK myalgic encephalomyelitis patients with is costing?
Just did some searching and found it here.

Grant Amount £244,056