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 got the feeling she didn't know much about the research, or understand it.

I used to post on the AfME website, and tried posting constructive comments below abstracts in their research section. When my comments didn't appear, I contacted the mods and found that the section wasn't even being monitored. What a wasted opportunity! I had hoped for some intelligent discussion with other scientists and sciency people. At least I finally found that here! :)
How long has Sonya been in the post MeSci?
 
@MeSci @Esther12
What do we all want to see in research?

Selecting candidates for research

Folks, I would like to hear your thoughts on the issue of selecting who takes part in research (as a subject). My concern with previous research was that because people were not severely enough affected, they probably did not even have ME as a distinct disease.

I think it's too easy to confuse severity of illness with actually having it. There are people with light fatigue and no other symptoms, they have no place in our research. There are also people with severe fatigue caused by other biochemistry - they also have no place in our research.

There are people with lighter fatigue who suffer either PEM or Fatigue with Delayed Onset - they are useful research candidates. I don't want to see people without ME determining our treatment, however nor do I want everybody having to develop severe ME before they get treatment. I want to see prompt treatment done correctly to prevent it becoming severe. I would like to see FDO or PEM as mandatory criteria.

My feeling is that we need to see the International Consensus Criteria used so that research can be compared and so that we have confidence that candidates have note been selected to suit the researcher. Clearly the research may need to have additional criteria (e.g. suffering a particular symptom) but should not contradict those basic criteria.

I would also like to require that every researcher demonstrate an adequate understanding of PEM, FDO before being permitted to do research. If they don't understand that, they understand our disease. Too many existing researchers fail to understand this, hence experience is no guarantee.

Finally I think there should be an even distribution of disease progression so that we can start to derive some clarity about cause and effect.

Disease Progression and Candidate Selection

My own view is that whatever causes the disease in the first place will be the first biomarker to appear. That as the disease progresses, more and more disturbances will appear just as their are more and more symptoms. I equally expect the treatment will get more complex as the disease progresses and that no single treatment will work in it's own.

I would like to see an assessment of current severity (at time of sampling) - e.g. using the Bell Scale.
I would also like to see reporting grouped by those severities.

If a piece of research is looking at mechanisms, I would like to see a distribution of fatigue levels so that we can see (for example) how thyroid hormone varies as the disease gets worse.
  1. This would allow us to determine why different studies show different results.
  2. It was also give GPs a much better idea what they need to look for in a particular patient
  3. Finally it would allow a proper determination of the underlying mechanism via disease progression.
If a piece of research is looking at treatment for the disease, I would like to know which of light, medium and severe fatigue benefit from it.

If the research is looking at the cause of the disease I would like to see the focus on the less severely affected, simply because they are more likely to sow the root cause with less 'knock on effects'.

What does everybody think?
 
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How long has Sonya been in the post MeSci?
I don't know. However, she has replied to questions on research in a way that suggests she knows little about it. If one knows little or nothing about a subject one should say so.
 
Leapardtail wanted a breakdown of AfME s charitable spending 2013, which is little more than their enormous salary bill (the salaries quoted before will be gross)

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@MeSci
Sonya Chowdhury is actively asking those of us with ME to comment on their missions statement / goals for research. If you want to be heard and taken notice of now's the time. They complete their review by end march this year.

B.
I have taken part in more surveys and consultations than I can remember, and spent a lot of time on them. I can't spare any more at the moment as I need my limited time and energy for other things, such as basic tasks and keeping the wolf from the door. I am now leaving it to others.
 
I've given up reading or posting on the AfME site. It is unbelievably slow to load each page and it is difficult to follow. I can't find stuff, things disappear, they can't even sort my username out, but use my real, full name, despite my asking to have it removed.
 
I've given up reading or posting on the AfME site. It is unbelievably slow to load each page and it is difficult to follow. I can't find stuff, things disappear, they can't even sort my username out, but use my real, full name, despite my asking to have it removed.

Their accounts show only £9k a year allocated to IT.

staff costs
1012563_10203213311798918_201026791_n.jpeg
 
I've given up reading or posting on the AfME site. It is unbelievably slow to load each page and it is difficult to follow. I can't find stuff, things disappear, they can't even sort my username out, but use my real, full name, despite my asking to have it removed.
Have you tried editing your profile?

It used to be really bad re the name issue, and showed everyone's full name, until a way was found by members to fix that - changing our 'real name' in our profiles to a made-up one! AfME frowned on this as it allegedly caused problems with their records (tough). I continued to alert people to how they could change them.

When I was last using the forums, that had been fixed, so you should be able to create a username in your profile page. Sorry I can't tell you how to get to the profile page as the website is playing up AGAIN, but I think the link is near/at the top of the main pages.
 
Thanks, both Min and MeSci, but I got completely confused trying to do that, I just gave up.
But I'm still absolutely furious that they publish my real name.

That useless setup costs 9K a year?
I've got a relative with ME who could do a far better job in his sleep (that would be essential!) for half the price.:angel:
 
Thanks, both Min and MeSci, but I got completely confused trying to do that, I just gave up.
But I'm still absolutely furious that they publish my real name.

That useless setup costs 9K a year?
I've got a relative with ME who could do a far better job in his sleep (that would be essential!) for half the price.:angel:
Similar things have been said on their forums! It is very amateurish.
 
Folk would be better off "meeting" there, then toddling off and forming a google group themselves. That's free... and it works better.
I'm afraid I thought it just went along with everything else AfME does. A lot of (meaningless) words and no action.

And an effective way of silencing folk who don't "toe the party line" and worship at the feet of the psych lobby ex-spurts.
 
As far as the salaries go, it seems like an awful lot especially when compared to over all revenue but I'm told by my husband that SC's salary for example is in line with middle management salary at this time which is normal for a charity CEO. She could make more in the private sector.

There is the issue of; are all middle management and above salaries inflated of course. (Yup). But it doesn't put the salaries at AfME out of line.

There is the problem of how they use what's left and why they can't manage to raise more. Although again we're not the most visible charity. Perhaps that's what needs to be changed.

I know I'm not from the UK (my daughter plans to stay though) so AfME really isn't my issue, but in a larger context it would be good to see AfME do the right thing and keep their promises. Making ME more visible is all our concern and I have been thinking on that for the past while since the IoM horror started. But of course what I do I do slowly. But making our concerns know, to the supplements industry as to what we want and expect, the the charities that supposedly support us, government, the public.

We need to work more coordinated and effectively building on what is there (having something ready for when "Canary in a coal mine" is released, for example.

Sorry if I went off topic.
 
As far as the salaries go, it seems like an awful lot especially when compared to over all revenue but I'm told by my husband that SC's salary for example is in line with middle management salary at this time which is normal for a charity CEO. She could make more in the private sector.

There is the issue of; are all middle management and above salaries inflated of course. (Yup). But it doesn't put the salaries at AfME out of line.

There is the problem of how they use what's left and why they can't manage to raise more. Although again we're not the most visible charity. Perhaps that's what needs to be changed.

I know I'm not from the UK (my daughter plans to stay though) so AfME really isn't my issue, but in a larger context it would be good to see AfME do the right thing and keep their promises. Making ME more visible is all our concern and I have been thinking on that for the past while since the IoM horror started. But of course what I do I do slowly. But making our concerns know, to the supplements industry as to what we want and expect, the the charities that supposedly support us, government, the public.
Well the way I looked at it was this. The AfME has the size and turnover of a small company a CEO salary there would certainly be no more than she earns. 'Middle management' in Britain would generally earn less in any organisation that had them.

What concerned me more greatly though was the average of all the other salaries. The mean salary of the other pay grades (below CEO) is over £50k. For that to be average salary of any organisation raises serious concerns about how well payroll is managed. Add that the the poor research funding and I am left asking questions.

I also noticed under the 'assets' that they have been losing capital and there has been no great uplift in funding.

Regards ME charities in general. The question I keep seriously asking is why we need two major ones (The ME Association and Action for ME) it divides our voice which is not a very strong one to begin with. I agree completely that 'visibility' needs to be improved. I think our charities need to be engaging with Panorama, Dispatches, day time chat shows for Mum's and getting the word out about how we are treat, how poor services are etc. We need an 'Oprah effect' to get people who are able bodied and able minded pissed-off and unwilling to stand for it.

We need to work more coordinated and effectively building on what is there (having something ready for when "Canary in a coal mine" is released, for example.

Sorry if I went off topic.
The tragedy of our illness is that (in contrast to the deaf, or the blind) we can't run our own charities due the that very lack of energy and lack treatment. I do agree though we need to find some way to be more organised and more proactive in fighting our own corner. All to often now we are represented by Doctors who are only slightly better than the one's persecuting us. They have the same disdain for everything that is not 'a drug' and the same over-emphasis on massively expensive placebo controlled trails of too few measures, while at the same time being unwilling to repeat trials/treatments on a larger scale tat show success.

There is too much ego around in ME research and too little genuine service.

It has occurred to me that an international, patient run, research fund, that allows us to decide which research got done would be a far better proposition. Equally where research has shown something productive it would allow us to get it repeated.
 
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As far as the salaries go, it seems like an awful lot especially when compared to over all revenue but I'm told by my husband that SC's salary for example is in line with middle management salary at this time which is normal for a charity CEO. She could make more in the private sector.

There is the issue of; are all middle management and above salaries inflated of course. (Yup). But it doesn't put the salaries at AfME out of line.

There is the problem of how they use what's left and why they can't manage to raise more. Although again we're not the most visible charity. Perhaps that's what needs to be changed.

I know I'm not from the UK (my daughter plans to stay though) so AfME really isn't my issue, but in a larger context it would be good to see AfME do the right thing and keep their promises. Making ME more visible is all our concern and I have been thinking on that for the past while since the IoM horror started. But of course what I do I do slowly. But making our concerns know, to the supplements industry as to what we want and expect, the the charities that supposedly support us, government, the public.

We need to work more coordinated and effectively building on what is there (having something ready for when "Canary in a coal mine" is released, for example.

Sorry if I went off topic.
I don't think it's a good argument to say that because salaries are high in the private sector they should be similar for charities. I believe in setting good examples rather than doing what others do. I also completely reject the often-repeated argument that high salaries are needed to attract the best people. High salaries attract the greediest people. If someone really cares about a company or a cause, they will not be seeking high financial reward for their work - it should be reward in itself to a considerable extent.

As for AfME's fundraising, they invite suggestions for fundraising and then reject most of them. I suggested something that would be relatively-easy to do, mostly by members with AfME just doing some coordination, and would also raise a lot of awareness, and they replied that they didn't have the resources! I could have done a lot of it on my very-basic computer, and I could also have produced a much more professional pdf of their accounts than they have done!

If I had suggested something stereotypical like a marathon or skydiving, they probably would have said yes.

They have also demonstrated a lack of understanding of ME by having giveaways of artificially-perfumed toiletries, etc.
 
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We have an excellent volunteer run UK charity funding high quality biomedical research and conferences for medical professionals, Invest in ME. They refuse to work with the Wessely school of psychiatry.

I really can't see why we also need Action for ME who spend almost the equivalent of their charitable donations on fat cat salaries, and who are, in my opinion, betraying us by working so closely with the Wessely school of psychiatry. For me, their ultimate betrayal has been their involvement in the PACE trial.
 
I feel a strong rebuttal of PACE and a public announcement decrying the disproven psychiatric theories would do their reputation lot of good, as would a committment to never getting involved with them again.

Coming from AfME, that should hold water in the mainstream press?
 
For me, their ultimate betrayal has been their involvement in the PACE trial.
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).
 
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 have to agree Esther, the problem with the involvement of Psychiatry and Physiotherapy in ME is not the disciplines themselves, but the quality of the individuals. That Whyte and Crawley continue to be involved in the MRC disgusts me - it is an afront.

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. Central to either form of therapy being successful is respect for the patient rather than arrogance and ignorance.

For me what's centrally missing is the involvement of people with ME in designing, monitoring and commissioning research -.ditto with treatment.

Ester, "the right stuff" did a slightly more even handed piece on ME some time ago. Have you thought about contacting them re the PACE farce?
 
Ester, "the right stuff" did a slightly more even handed piece on ME some time ago. Have you thought about contacting them re the PACE farce?
A lot of it requires a lot of work to understand, so may not be ideal for a daytime show? Not sure (also, I've got other stuff I'm busy not doing!)
 
A lot of it requires a lot of work to understand, so may not be ideal for a daytime show? Not sure (also, I've got other stuff I'm busy not doing!)
They have a dedicated team that research issues heavily. The issue of candidate selection alone is simple enough to be understood. I realise you may have too little time or energy for this but you do stand a good chance of the issue getting aired and he does seem to have a relatively bright audience.