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

A key focus for us now is to turn our intent and aspiration for meaningful patient involvement and engagement into something real and tangible. I am absolutely passionate about achieving this and am determined that we will get there. I am also committed to working with Stephen Holgate and the Collaborative to embed patient involvement in its work.

We are also exploring and responding to other suggestions and ideas about patient involvement in addition to a patient reference group.

As I've mentioned, and as is outlined in the draft strategy summary/our recent call for applications, we are keen to fund more biomedical research projects. We are also inviting our supporting members and those who donate to our current research appeal to select their top research project to help us prioritise the allocation of funding. This information will be openly available so the process and results are transparent.
Hi Sonya,
Thank you for responding. These look like very positive developments that you are leading. I'm grateful for these changes that you seem to be implementing.

Re the PACE trial. When I questioned why AfME has not explained the actual results to its members, I was referring to the published results, rather than the misinformation that was widely disseminated post-publication.
Just to clarify what I meant, the following are the actual results published in the various published papers:

CBT and GET did not lead to clinically significant improvements in objective outcomes (e.g. disability, employment hours, and welfare claims) (disability was assessed in the six minute walking distance test); and only 11-15% of participants experienced any (additional) subjective improvements for the primary outcomes when CBT or GET were added to SMC.

These actual results from the published papers are in stark contrast to the heavily promoted misinformation that there was a 30% 'recovery' rate, etc.

It is difficult to understand why AfME has not explained these basic and central results to its members, in a factual manner.
Unless AfME understands and acknowledges these results (and ideally explains them to its members), I can't see how it can fully represent the interests of patients, as the results of the PACE trial are central to current NICE & NHS policy, etc. This means that the results of the PACE trial affects every NHS patient.
Hi Bob - we revised the information on our Online M.E. Centre some time ago and do not cite a 30% recovery rate. Best wishes, Sonya
 
Hi Esther - I have read and digested the information that has been produced from the various PACE papers. I absolutely hear what you say about your expectations of me and the and of Action for M.E. As I stated earlier, we are not currently going to take any further actions. I accept that this is unacceptable to you and whatever I say will not make up for this. We will of course continue to ensure patient involvement in our future work.
Best wishes, Sonya
But I assume that you did take recent action to write a letter to the court looking at an FoI request for the trial steering committee saying you did not want the minutes made public. How does this help ensure patient involvment when you wish to keep things secret.
 
Hi Esther - I have read and digested the information that has been produced from the various PACE papers. I absolutely hear what you say about your expectations of me and the and of Action for M.E. As I stated earlier, we are not currently going to take any further actions. I accept that this is unacceptable to you and whatever I say will not make up for this. We will of course continue to ensure patient involvement in our future work.
Best wishes, Sonya
Never-mind taking any positive action, you've not yet even explained your current position, or preference for inaction.

How do you know that whatever you say will not make up for your inaction, when you've not made any attempt to explain you current position? If you had a reasonable justification, then that would make a difference. I'm keen to see you try to change my mind. Why not try and explain yourself?

Hi Bob - we revised the information on our Online M.E. Centre some time ago and do not cite a 30% recovery rate.
Did you ever? Who is advising you on this stuff?
 
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Perhaps it's been a long time since I scrutinised AfME's online information.
I've just had a look, and there is a wide range of PACE-related information on the website, including many links to critical information.
It even includes a link to the Phoenix Rising PACE trial analysis:
http://www.actionforme.org.uk/get-i...2012/evaluating-the-results-of-the-pace-trial

The primary outcome improvement rates that I highlighted earlier (and asked why AfME hadn't published them) is actually now published prominently on AfME's website (although perhaps not explained quite as clearly as it could be) (my emphasis):
This is not the same as being recovered; it identifies an improvement for those patients that undertook CBT and GET over and above any benefit of standard medical care alone (14-16% improvement), which included advice on self-management.

http://www.actionforme.org.uk/get-informed/about-me/treatment/pacing/pace-trial
So I have to backtrack, and acknowledge that AfME has published more than I had thought.
I don't remember having seen this information before on the AfME website. But it seems that AfME's PACE information is more balanced that I thought it was.
I can't see any reference to 30% recovery rates, and I have no reason to disbelieve Sonya that any such references have been removed.
I cannot find an explanation of the objective outcomes though (i.e. disability, employment hours, and welfare benefits), and it would be nice to see these results highlighted.

The website includes a statement from BACME which I disagree with because it ignores the methodological and statistical flaws of the PACE trial:
The PACE Trial represents the highest grade of clinical evidence – a large randomised clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported.

http://www.actionforme.org.uk/get-i...-campaigns/2011/bacme-statement-on-pace-trial

So AfME's website information about the PACE trial is much better, and more balanced, than I remember it being. I guess it has grown and evolved over time and, as Sonya says, it has been amended.
Personally, I'd be reasonably satisfied if the published results of the PACE trial are disseminated clearly and honestly, and it seems that has now been accomplished to some degree on the AfME website, but with a number of omissions (i.e. the objective outcomes.)


I'm looking forward to AfME's new direction of travel, including the proposed renewed patient engagement. I hope it's a period of renewal in terms of engaging with patients, and representing the needs of patients.
 
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re 'prevention', I just posted in a thread about the only trial on 'prevention' I can see happening in the UK at the moment. Looks like a joke study: http://forums.phoenixrising.me/inde...e-effects-of-early-intervention-for-me.13736/

And similar/worse to the old Chalder/Wessely study which has been so repulsively spun: http://forums.phoenixrising.me/inde...o-educational-intervention-to-aid-reco.13326/

I have no idea what value anyone could claim there is to this new study.

Personally, I'd be reasonably satisfied if the published results of the PACE trial are disseminated clearly and honestly, and it seems that has now been accomplished to some degree on the AfME website, but with a number of omissions (i.e. the objective outcomes.)
That requires the release of meaningful data on recovery. That means AfME should take a proactive approach to ensuring that patients are able to access this data and are able to make informed decisions about their own health care. Instead, they seem happy to let patients be manipulated by quacks.
 
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The h'ghly controversial PACE trial was developed by psychiatrists 'with the help and support of the UK charity Action for ME.' AfME have been silent on the way that the data from the trial appear to have been shamelessly manipulated to make it seem as if the very exercise regimes that have been detrimental to numerous M.E. patients' health , are somehow beneficial. They have been silent on the researchers' refusal to release the deterioration rates from the trial.

AfME 'S only full members are the executive, with all the others deemed 'associate members' and refused voting rights. How is this giving them a voice?

AfME could surely fund far more biomedical research if its salary bill were not so huge. The CEO alone earns approximately £75,000 a year.This is a huge amount, and in contrast, the charity Invest in ME is run entirely by volunteers and is already funding a vital entrovirus research project, with a Rutiximab research project planned soon.Unlike AfME, Invest in ME refuse to work alongside the very psychiatrists (known to have links to the health
insurance industry) who have stifled research into myalgic encephalomyelitis since the
1960s and caused untold suffering by their insistence that the illness is a functional somatic syndrome treatable by exercise.

Yes, AfME, you could do better.
Given that rather disgraceful salary, I will NOT be renewing my membership.
 
Given that rather disgraceful salary, I will NOT be renewing my membership.
I find it worth it for the three £10 Goodness Direct vouchers a year, which gives me double what I pay in membership fees! :D
 
I find it worth it for the three £10 Goodness Direct vouchers a year, which gives me double what I pay in membership fees! :D
Never had the vouchers, so can't comment on that one...
but nice to see the cheesey grin :-D
 
Never had the vouchers, so can't comment on that one...
but nice to see the cheesey grin :-D
Look at the ads in the magazine InterAction. The Goodness Direct voucher code is in a box ad. It's the first thing I look for when the magazine arrives.
 
Latest Blog from CEO Sonya Chowdhury: 15 January 2014: http://www.actionforme.org.uk/get-informed/news/our-news/ceos-blog-working-on-our-research-strategy

CEO's blog: working on our Research Strategy
15 January 2014

Based on your feedback, our CEO Sonya Chowdhury has been further developing Action for M.E’s Research Strategy.

Over the Christmas break, I took the opportunity of some rare quiet time when the emails landing in my inbox were relatively few and far between and the phones were silenced to work on our new Research Strategy.

As many of you will know, over the last few months, we have been consulting with supporting members, researchers and others affected by M.E. to inform our Strategy. The engagement has been phenomenal with approximately 1,200 people inputting in one way or another.

Alongside two research priorities surveys (one asking people affected by M.E., another asking researchers) and a roundtable discussion at our as part of our Research Conference and AGM, I have had a staggering number of emails and letters. Thanks also to Simon McGrath and Russell Fleming for their Phoenix Rising article highlighting our work and consultation.

Broad range of views
The range of views, wishes and opinions has been broad and trying to reconcile these into one Research Strategy has not been easy. There will inevitably be some that we have not acted on. But I have listened and responded to them all and each one has played a valuable role in getting to this point. To give you flavour of what people have been telling me, here are just a few examples:

  • “Stop funding research and focus on direct services and support.”
  • “Fund only research.”
  • “Prevention should not be a priority as we need a cure.”
  • “So much money has been spent trying to find a cure and we’re years away from this, so focus on prevention.”
  • “Epidemiology is not important and funding should only go into biomedical research.”
  • “If we understand more about the groups and subsets of people M.E. affects, we will gain invaluable insight that we don’t currently have.”
Continues...
 
Since they are emphasizing a couple contradictory opinions, my guess is that they'll use that as an excuse to continue business as usual. Useless.
That's my fear.

I think that they need a venue for open and ongoing debate, where all views and opinions are not respected, but challenged and picked apart.

One of the disappointing things here was how totally unwilling Sonya was too even attempt any real defence of Action for ME's approaches.
 
That's my fear.

I think that they need a venue for open and ongoing debate, where all views and opinions are not respected, but challenged and picked apart.

One of the disappointing things here was how totally unwilling Sonya was too even attempt any real defence of Action for ME's approaches.
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! :)
 
AfME gave a miserable £58k to research in 2013. Their salary bill, which is huge for such a small charity, was £545k for 9 employees. The CEO earns £75k a year (the average salary for a charity CEO in the UK is about £27k), more than the research donation. The director of fundraising earns £40-50k. With salaries like this, no wonder they have so little to spend on research.

Did AfME or its employees as individuals benefit financially from their involvement in the PACE trial?
 
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Doesn't seem like much of a charity at all, when such a huge chunk of funds are going to salaries, and so little to benefit patients. Exactly what skills do those employees possess which make such a salary warranted? It really looks like they're just raising money to pay it to themselves, with a trivial amount left over to spend on actual charitable endeavors.
 
The enormous salaries would be more suited to a large London based charity than a small Bristol based one.

AfME's total charitable expenditure in 2013 was £562.473, hardly more than their salary bill. I wish those good people who fundraise so hard for them could be made aware of this.
 
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An average of 50K per staff member (excluding the MD) does seem a lot doesn't it?

A lot does depend on what 'gross salary' means though. When I ran a company if exployees bought (for example) paper on their own credit cards and submitted an expense claim, then what was paid to them still counted in 'gross salary' reporting in britain does not distinguish the two which is kind of nuts. Same goes for travel cards bought by the company.

It's also important to realise AfME acts mainly as a source of advice and support and probably spends a lot of cash on that. I would like to see (on this report) a breakdown of what is spent on 'support' vs 'charitable donations'. Support is from a financial perspective mostly about salary.

Quite why the average is so high does raise obvious questions though!
 
@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.