Open personal letter to the trustees of the UK ME Association, December 2024

Trish

Trish

Moderator
Staff member
I have just sent the following personal letter to the Trustees of the UK ME Association. Or at least to some of them. I had 2 email addresses and guessed the rest - at least 2 have bounced back.
__________________

To the trustees of the ME Association,

re concerns about the MEA trusteeship, management and complaints procedures

Dear Neil Riley, Charles Shepherd and fellow trustees,

I am not a currently a member of the ME Association though I have been for many years in the past, and would be again if I had not lost confidence in the organisation. I have severe ME/CFS and am also a carer. I am a committee member of the Science for ME forum, but am writing to you in a personal capacity.

I am a huge admirer of Charles Shepherd's contribution to ME/CFS science, clinical guidance and advocacy over many years. The MEA has been a highly respected organisation for many years largely on the basis of Dr Shepherd's extensive contributions.

I have been much disturbed by recent and current concerns about the MEA's management, responses to complaints, and financial trusteeship. I am writing to you as a 'critical friend' to suggest some actions the trustees could take as a matter of urgency to calm current growing disquiet.

While the MEA was small and largely run by volunteers, it probably made sense for there not to be a separation between trusteeship and day to day management and operation. However, it has been clear to me and others for some time that the MEA, which now employs a significant number of staff, really needs to have an independent group of trustees, with those doing the daily running, whether volunteers or paid employees, needing a professional paid chief executive to run the organisation (as AfME has). Reliance on now elderly volunteers as chair of trustees to manage such an organisation, and to manage large funds, is not appropriate, and has led to mistakes not being dealt with properly by the trustees, in my view.

I have read with care the Q&A on questions raised at the recent AGM. I have some comments and suggestions. I recognise that as a non current member I have no right to have a say in the running of the MEA, however my daughter and I are impacted by the work of the MEA, and need our charities to act in our best interests. I would like to be able to rejoin the MEA with confidence.

To be specific, I have three main areas of concern:

1. Neil Riley's role and actions.
I am not able to comment on the internal management of the MEA, but the impression given is of a set of fairly junior staff, some with team leaders, but without a professional overall manager, and with Mr Riley taking that role informally. Mistakes are being made, and there appears to be no proper complaints department. For example, the magazine editor should not have published as an editorial Neil Riley's offensive and insensitive 'personal story' that, among other things, advised people with severe ME/CFS to get out of bed and dress every morning. Nor should Neil Riley take upon himself to be the complaints department, as described in his flippant and insulting short piece about that role in a recent MEA magazine.
Dealing with complaints is clearly a role Neil Riley is ill suited for, judging by his dismissive and insulting responses to complaints on several issues.

2. The Sarah Tyson toolkit and PROMs project
I don't know who approved £90,000 of MEA funding for, and involvement of the MEA with, the SarahTyson tookit and PROMs project, but I have been dismayed both by the output to date and the behavour of Tyson towards Science for ME forum members. I was horrified by Neil Riley's dismissive response to our complaint and wholehearted support for this project. The apparent intention to use this MEA funded and approved project to perpetuate the worst of BACME rehabilitation approaches in England under the guise of patient supported NICE compliant 'treatment' is shatteringly disappointing after all the good work on the NICE guideline. That the MEA would be enablers of such a project goes against all we have fought for. If this is an exemplar of the direction the MEA is taking, I am seriously concerned and I think the MEA trustees should be too. Too close and uncritical coproduction of resources with BACME is concerning. It concerns me that Russell Fleming is apparently involved in the team running this research, and presumably supports it, while also having a key role in developing new projects for the MEA. That does not give me confidence in the future work of the MEA. A more arms length critical approach to BACME is, I believe, warranted. The MEA should be in a leading role in promoting best practice, as I believe Charles Shepherd works hard to do, not supporting BACME's perpetuation of the old therapist led rehabilitation model of clinical care, as this project appears to be doing.
https://www.s4me.info/threads/open-...ct-developing-proms-led-by-sarah-tyson.37937/

3. Legal and ethical aspects of payment of trustees for contract work for the MEA.
I have not been able to follow all the details of the concerns over whether some payments were legal or not, and whether they fulfilled the requirements of the Charity Commission. However, I have observed some of the ongoing discussions and attempts to get to the bottom of what was approved and what documentation has been agreed by MEA membership and lodged with the appropriate authorities. My observation is that this is not just some agitators making trouble. There seem to be serious concerns that need to be clarified. Just saying 'we did nothing wrong', is not going to make this concern go away. My personal view is that it may not be ethical for someone to be both a trustee and to be paid significant sums on an ongoing basis for contract work for the charity, even if it is legal to do so.
Further to my comments in parts 1 and 2, I have been dismayed to see the dismissive response from Neil Riley to the concerns raised about this issue has been to provide no evidence and to threaten legal action against those asking legitimate questions.

Suggested actions

The trustees set up an independent complaints department that does not include Neil Riley, and is staffed by people with suitable personal qualities and professional experience.

The trustees start as soon as possible the process of appointing a paid professionally experienced chief executive/general manager from outside the current staff and trustees.

The trustees initiate a review, as a matter of urgency, of the materials produced by Sarah Tyson's team and future plans for the project, to be carried out by expert patients and clinicians from outside the project's current leaders and patient advisory group. That they be asked to write a report with recommendations. Following this critical review process, the possibility of closing down the project, and not giving MEA support to the materials produced to date, should be on the table. I would also urge that Professor Tyson should not be funded by the MEA for any future projects.

The trustees announce that you will commission an independent report including documentary evidence, to be made public, on whether payments to trustees for contract work are, and have always been, within the rules.

The MEA cease any ongoing paid contracts with trustees, either transferring the work to other bidders, or the trustee involved stepping down from their trustee role if they are to continue on an ongoing basis receiving payment for work. I think it would be more ethical for the MEA to change its rules to reflect this.
________________

The MEA can be rescued and become again a respected and trusted organisation, building on Charles Shepherd's fantastic legacy. Action is needed now to restore confidence in the direction of travel of MEA work, and to put the trusteeship and management on a more professional footing.

Since I support openness in communication with ME organisations, I will post this as an open personal letter on the Science for ME forum, along with any response I receive.

Best wishes,

Trish Davis
 
Great letter overall (as usual:)).

I also like this suggestion
Trish said:
The trustees announce that you will commission an independent report including documentary evidence, to be made public, on whether payments to trustees for contract work are, and have always been, within the rules.
Click to expand...
but I wonder if such inquiry and report should not be done by the Charity Commission itself. (Or better said: that the Charity Commission will not do that anyway.) They are the oversight/regulation body after all and they do this,

See e.g.: Charity Commission disqualifies former trustees of genealogy charity and recovers £113,000 - GOV.UK
(Not saying this should/will happen to ME Association trustees, but showing that it's the CC's job to do such inquiries and reports.)
 
Arvo said:
Great letter overall (as usual:)).

I also like this suggestion

but I wonder if such inquiry and report should not be done by the Charity Commission itself. (Or better said: that the Charity Commission will not do that anyway.) They are the oversight/regulation body after all and they do this,
Click to expand...

on the other hand the question is can the MEA mark their own homework, do they want to try again and show they can or would they rather a new law mark it for them - regulate or dereg is the global viral question
 
That's an excellent letter, Trish; I don't think there's a word I disagree with. MEA's direction of late has been very concerning. A few more thoughts for MEA, in the spirit of another critical friend:

The MEA would do well to undertake a serious review of its internal governance. There should be clear blue water between those overseeing the charity as trustees and those responsible for day-to-day operations. A professional complaints policy & procedure, a review of the Articles; clear, informative annual reports and open AGMs where participation is encouraged would be welcome. AfME's open AGM, to which pwME were invited whether members or not & in which Sonya Choudhury tackled the Gladwell issue head on, is something that MEA could learn from. The financial & service arrangements with trustees should be reviewed: if those are to continue, the people involved should not also be trustees. Appearances matter: whether the charity has adhered to its legal obligations clearly matters a great deal, but the appearance of impropriety can be as corrosive to trust as impropriety itself. Professional advice on governance should be sought.

Tyson's PROMs project is not the only example of MEA funded research that is likely to be of poor quality or unlikely to produce tangible benefits: they have also recently funded dysautonomia protocols by rehabilitationists and an ear-clip "vagus nerve stimulator" trial, amongst other dubious-sounding projects. While I'd hesitate to give an opinion on research without seeing the actual proposals, the information that has been made public does not look at all promising. The development of a long-term strategy to support, fund & encourage robust research would be welcome; professional advice on fundraising may also be of use.

The patient-facing materials produced by MEA should be reviewed as a matter of urgency: some of them, like this one I mentioned recently, contain significant errors, and many more make dubious or unsupported assertions. A number of documents on the MEA's website even suggest that "atypical" "fits or seizures" and other symptoms that typically fall squarely under the rubric of FND are a part of severe ME/CFS, which is not only entirely unevidenced but highly counterproductive advice to give.

A review of how MEA interacts with clinicians, the NHS, and BACME would also be welcome. I think a tougher approach to the useless-to-actively-harmful "specialist services" is required. I have been concerned by information on MEA's website implying that MEA supports or approves of current NHS service provision rather than advocating for a new service model, even maintaining a directory of the clinics without any cautionary note as to the type of "treatment" patients might encounter: in most cases pwME would be better managed by a GP than attend such "services". Any involvement with BACME should be kept under constant review; it is quite easy to end up with compromise positions that are against our interests.

Greater realism in how our situation is presented to members & to the public is needed; from the MEA magazine articles I've come across, things are presented with a glossy positivity that is almost entirely unwarranted. If members had a better, more realistic idea as to the position we're really in more of them may well become involved in advocacy efforts.

I'd also like to see a broader conversation in the ME patient community as to what pwME want and need from the charities that are supposed to be representing them. At present they seem far too remote, opaque and unaccountable, and too often act in ways that I think are manifestly contrary to our interests. At present I do not think there is any major ME/CFS charity (perhaps with the exception of MERUK) that I would consider donating to. What they do has the potential to affect all of our lives: they should consult broadly and be responsive to concerns. A far greater degree of openness, transparency and accountability is badly needed.
 
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Trish said:
I have just sent the following personal letter to the Trustees of the UK ME Association. Or at least to some of them. I had 2 email addresses and guessed the rest - at least 2 have bounced back.
__________________

To the trustees of the ME Association,

re concerns about the MEA trusteeship, management and complaints procedures

Dear Neil Riley, Charles Shepherd and fellow trustees,

I am not a currently a member of the ME Association though I have been for many years in the past, and would be again if I had not lost confidence in the organisation. I have severe ME/CFS and am also a carer. I am a committee member of the Science for ME forum, but am writing to you in a personal capacity.

I am a huge admirer of Charles Shepherd's contribution to ME/CFS science, clinical guidance and advocacy over many years. The MEA has been a highly respected organisation for many years largely on the basis of Dr Shepherd's extensive contributions.

I have been much disturbed by recent and current concerns about the MEA's management, responses to complaints, and financial trusteeship. I am writing to you as a 'critical friend' to suggest some actions the trustees could take as a matter of urgency to calm current growing disquiet.

While the MEA was small and largely run by volunteers, it probably made sense for there not to be a separation between trusteeship and day to day management and operation. However, it has been clear to me and others for some time that the MEA, which now employs a significant number of staff, really needs to have an independent group of trustees, with those doing the daily running, whether volunteers or paid employees, needing a professional paid chief executive to run the organisation (as AfME has). Reliance on now elderly volunteers as chair of trustees to manage such an organisation, and to manage large funds, is not appropriate, and has led to mistakes not being dealt with properly by the trustees, in my view.

I have read with care the Q&A on questions raised at the recent AGM. I have some comments and suggestions. I recognise that as a non current member I have no right to have a say in the running of the MEA, however my daughter and I are impacted by the work of the MEA, and need our charities to act in our best interests. I would like to be able to rejoin the MEA with confidence.

To be specific, I have three main areas of concern:

1. Neil Riley's role and actions.
I am not able to comment on the internal management of the MEA, but the impression given is of a set of fairly junior staff, some with team leaders, but without a professional overall manager, and with Mr Riley taking that role informally. Mistakes are being made, and there appears to be no proper complaints department. For example, the magazine editor should not have published as an editorial Neil Riley's offensive and insensitive 'personal story' that, among other things, advised people with severe ME/CFS to get out of bed and dress every morning. Nor should Neil Riley take upon himself to be the complaints department, as described in his flippant and insulting short piece about that role in a recent MEA magazine.
Dealing with complaints is clearly a role Neil Riley is ill suited for, judging by his dismissive and insulting responses to complaints on several issues.

2. The Sarah Tyson toolkit and PROMs project
I don't know who approved £90,000 of MEA funding for, and involvement of the MEA with, the SarahTyson tookit and PROMs project, but I have been dismayed both by the output to date and the behavour of Tyson towards Science for ME forum members. I was horrified by Neil Riley's dismissive response to our complaint and wholehearted support for this project. The apparent intention to use this MEA funded and approved project to perpetuate the worst of BACME rehabilitation approaches in England under the guise of patient supported NICE compliant 'treatment' is shatteringly disappointing after all the good work on the NICE guideline. That the MEA would be enablers of such a project goes against all we have fought for. If this is an exemplar of the direction the MEA is taking, I am seriously concerned and I think the MEA trustees should be too. Too close and uncritical coproduction of resources with BACME is concerning. It concerns me that Russell Fleming is apparently involved in the team running this research, and presumably supports it, while also having a key role in developing new projects for the MEA. That does not give me confidence in the future work of the MEA. A more arms length critical approach to BACME is, I believe, warranted. The MEA should be in a leading role in promoting best practice, as I believe Charles Shepherd works hard to do, not supporting BACME's perpetuation of the old therapist led rehabilitation model of clinical care, as this project appears to be doing.
https://www.s4me.info/threads/open-...ct-developing-proms-led-by-sarah-tyson.37937/

3. Legal and ethical aspects of payment of trustees for contract work for the MEA.
I have not been able to follow all the details of the concerns over whether some payments were legal or not, and whether they fulfilled the requirements of the Charity Commission. However, I have observed some of the ongoing discussions and attempts to get to the bottom of what was approved and what documentation has been agreed by MEA membership and lodged with the appropriate authorities. My observation is that this is not just some agitators making trouble. There seem to be serious concerns that need to be clarified. Just saying 'we did nothing wrong', is not going to make this concern go away. My personal view is that it may not be ethical for someone to be both a trustee and to be paid significant sums on an ongoing basis for contract work for the charity, even if it is legal to do so.
Further to my comments in parts 1 and 2, I have been dismayed to see the dismissive response from Neil Riley to the concerns raised about this issue has been to provide no evidence and to threaten legal action against those asking legitimate questions.

Suggested actions

The trustees set up an independent complaints department that does not include Neil Riley, and is staffed by people with suitable personal qualities and professional experience.

The trustees start as soon as possible the process of appointing a paid professionally experienced chief executive/general manager from outside the current staff and trustees.

The trustees initiate a review, as a matter of urgency, of the materials produced by Sarah Tyson's team and future plans for the project, to be carried out by expert patients and clinicians from outside the project's current leaders and patient advisory group. That they be asked to write a report with recommendations. Following this critical review process, the possibility of closing down the project, and not giving MEA support to the materials produced to date, should be on the table. I would also urge that Professor Tyson should not be funded by the MEA for any future projects.

The trustees announce that you will commission an independent report including documentary evidence, to be made public, on whether payments to trustees for contract work are, and have always been, within the rules.

The MEA cease any ongoing paid contracts with trustees, either transferring the work to other bidders, or the trustee involved stepping down from their trustee role if they are to continue on an ongoing basis receiving payment for work. I think it would be more ethical for the MEA to change its rules to reflect this.
________________

The MEA can be rescued and become again a respected and trusted organisation, building on Charles Shepherd's fantastic legacy. Action is needed now to restore confidence in the direction of travel of MEA work, and to put the trusteeship and management on a more professional footing.

Since I support openness in communication with ME organisations, I will post this as an open personal letter on the Science for ME forum, along with any response I receive.

Best wishes,

Trish Davis
Click to expand...
Masterful Trish.
Thank you.
 
Having failed to reach a couple of the trustees directly, I sent my letter to the admin email and asked for it to be sent on. I have received this acknowledgement:

Dear Trish

Thank you for your email.

I have passed this on to our Trustees.

In the last few weeks, we have experienced a large increase in enquiries to the charity, many of which concerned the recent AGM and the topics discussed there.

This has resulted in our staff spending much of their time on dealing with many different enquirers but who are raising similar questions. Naturally, this means a duplication of effort and time for our staff and means that our response cannot be as prompt as we would wish.

We have prepared a Q and A section on our website which we hope will answer your questions. https://meassociation.org.uk/about-the-mea/policies-and-documents/ If any new questions are raised then we will add answers to them through that section.

This has three great advantages:-
  1. Your questions will be dealt with promptly
  2. Our staff will be able to concentrate on the primary purpose of the charity in helping people with ME/CFS through information, support, education and research
  3. Updating you on answers to new questions will be faster and enable you to be better informed
Kind regards

Helen
 
In other words; quieten down you pesky ill people, we have far more important things to be doing that focusing on governance and being a well run charity. Suspect that all came copied and pasted from the pen of Riley himself.

They clearly haven't asked themselves the question; why are these pesky ill people still asking us the same questions when we have given them our answers?
 
Trish said:
Having failed to reach a couple of the trustees directly, I sent my letter to the admin email and asked for it to be sent on. I have received this acknowledgement:

Dear Trish

Thank you for your email.

I have passed this on to our Trustees.

In the last few weeks, we have experienced a large increase in enquiries to the charity, many of which concerned the recent AGM and the topics discussed there.

This has resulted in our staff spending much of their time on dealing with many different enquirers but who are raising similar questions. Naturally, this means a duplication of effort and time for our staff and means that our response cannot be as prompt as we would wish.

We have prepared a Q and A section on our website which we hope will answer your questions. https://meassociation.org.uk/about-the-mea/policies-and-documents/ If any new questions are raised then we will add answers to them through that section.

This has three great advantages:-
  1. Your questions will be dealt with promptly
  2. Our staff will be able to concentrate on the primary purpose of the charity in helping people with ME/CFS through information, support, education and research
  3. Updating you on answers to new questions will be faster and enable you to be better informed
Kind regards

Helen
Click to expand...
That’s not good enough


It’s one thing if the question asked means they can use as a template something already covered in said q&a

but sounds like they are being told to send everyone there without reading the questions

I’ve done enquiry accounts back in the day and managed them. You add that line which is their total response as an added sign off to ‘should you have more questions’ look there NOT ‘I don’t care what you are asking’ and pointing someone there even if it doesn’t cover their question
 
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