The ME Patient Foundation

they have a 'talking' website! wasn't expecting that.

my only reservation at the moment is I found this
"Supporting the case for a full enquiry into the mistreatment of patients. More details can be found here."
which takes to to Dr Myhills MAIMEs project including
"WOULD YOU LIKE A FREE COPY OF DR MYHILL'S NEW CFS/ME BOOK TO GIVE TO YOUR MP?"

https://themepatientfoundation.org/get-involved/

 

Probably diagnostic. Some MS cases are fairly straightforward but most aren't so it's not universal. It leads to the same uncertainty and have-you-tried-yoga? until a diagnosis is officially made.

Essentially it takes specialist expertise to confirm a case, the biomarkers aren't sufficiently reliable. No GP would ever make that diagnosis on their own. So it's a mix of biomarkers, clinical observation and clinical expertise. As is the case with us, except the whole actually taking it seriously part that makes the expertise available and at least somewhat reliable.

 

Thank you so much for taking the time to explain, very kind of you!

 

Latest Facebook post



They are heading to the Evidence-based medicine conference in Oxford by the sound of things.

@Caroline Struthers may want to link up with them.

 

https://twitter.com/user/status/1150718868400328704

Code:

https://twitter.com/mepfuk/status/1150718868400328704

 

Well that's enough to put me off (though I have joined their email list) as I'm afraid I think a lot of Dr M's stuff is a way of cashing in on desperate patients.

 

I find this puzzling, too. I can't understand how endorsing Dr. Myhill and at the same time referring to EBM to criticize ME research could add up.

Also, on the foundation's website, Dr. Myhill is listed in the category "Scientists involved in biomedical research" which to me seems to suggest that being involved in biomedical research implicitely means always doing good science as opposed to "Clinics and Scientists using the BPS Approach".

Dear founders of the ME Patient Foundation, if you are reading this thread, would you like to comment?

 

as she is one of their advisors I imagine she already has!

 

https://twitter.com/user/status/1168991155360620544

 

A statement from trustees is being prepared.

When it has been finalised, a copy is being forwarded to me for posting here.

 

GoogleDocs Link: http://bit.ly/statementMEPF




PDF version attached

Concerning The ME Patient Foundation, 4th September 2019

It is with deep regret that we are issuing this statement regarding the closure of The ME Patient Foundation shortly after its launch on 1st July 2019.

Despite our position as trustees for the MEPF we were as surprised as the rest of the ME community by the charity’s closure as we received no indication this was in the pipeline. At our last trustee meeting in early August a positive discussion had taken place concerning the direction the charity was heading and there had been no hint that the closure of the charity was being considered. We were gobsmacked to be informed via email late on 2nd September 2019 that the other trustees, Emma (the charity’s founder) and Adam Joy, were resigning immediately, stating the workload had become unacceptable due to its impact on Emma’s health and family life. They suggested we take over the running of the charity alone but unfortunately this was not possible as,

• We are both ill ourselves and would not be able to manage the significant workload
  
• A minimum of three trustees is required to run a charity

We feel we owe the ME community an explanation as we are keenly aware people feel let down by this turn of events, so here we outline some points to help clarify matters:

1. We believe the charity was launched prematurely on 1st July. During trustee meetings we advised that sufficiently qualified volunteers should be in place before the official launch, our concern being the workload would be too much otherwise. We successfully delayed an earlier launch date in May but, at a subsequent trustee meeting, were informed the charity was being launched on 1st July as a fait accompli, without further consultation.

2. In July we were informed during a work meeting that the other trustees would be away on holiday in the USA for the whole of August, and that they would be unavailable for much of this period. Given the charity had only recently been launched, we were surprised by this decision though given how hard Emma had been working we were understanding and did not raise any objections. No discussion took place regarding how to structure the month of August and how to proceed with volunteer recruitment.

3. The absence of the other trustees and lack of volunteers meant we took on a significant workload during August, sometimes communicating at cross purposes with prospective volunteers due to the difficulty in contacting the other trustees.

4. On 2nd September, we submitted an extensive report of the work carried out in August, detailing how we thought the charity needed to be structured and run in the future to honour its duties and responsibilities to ME patients. We had informed the other trustees on their return from their holiday that we were preparing the report and no indication was given that they were intending to relinquish their roles in the MEPF.

We wish to make clear that our work and trustee meetings were conducted in a friendly and constructive manner and there was never any argument or bad feeling amongst the trustees. We were concerned that certain decisions, e.g. the launch date, appointment of advisors, were being made unilaterally and that controversial issues regarding certain individuals on the Foundation’s website were ignored but thought this was resolvable and were looking forward to achieving great things with the charity.

In the official MEPF statement announcing its closure (a statement released without our being consulted), ‘a lack of resources’ is given as the prime reason for the charity’s closure; if indeed this is the case, it is due to rushing to launch the charity before such resources were put in place. Unfortunately, there had been no discussion that this was an issue before we were informed the other trustees were leaving. Had this issue been raised we would have done all we could to resolve the situation and keep the charity running, in fact, we did so by submitting a detailed work report complete with suggestions along Charity Commission guidelines.

We do not condone the charity’s closure and wish to offer our sincere apologies to the ME patients who placed their trust in the MEPF to provide them with much needed support. We were inspired to become trustees due to the founder’s passion, compassion, positive spirit and vision. We have asked Emma and Adam to ensure that donations made to the Foundation be given to Invest in ME or other suitable charities pursuant to legal requirement.

We hope this has provided some clarity for those who were as shocked as we were by the charity’s unexpected closure and apologise for our role in what has turned out to be another unfortunate event in the ME world.


Dr Claudia Gillberg
Geoffrey Jones


-----------------------------------

Claudia and Geoff would like people to know that their ongoing projects won't be affected by this development and that they would be happy to answer any further queries.

Dr Claudia Gillberg @DrCSGillberg

Geoffrey Jones @geoffbiosci

-----------------------------------

Posted by Suzy Chapman, Dx Revision Watch, on behalf of Dr Claudia Gillberg and Geoffrey Jones

Suzy Chapman has no affiliation with The ME Patient Foundation https://themepatientfoundation.org

 

Why didn't they look for other trustees to replace the ones who couldn't do it?

 

Why would the two remaining trustees wish to continue in those circumstances where there are probably inadequate funds to enable them to carry out the objects of the charity, the workload would be far greater than anticipated, and they have insufficient information about the true position of the charity. Far better to close it down.

 

Sarah94, I'm afraid I cannot field questions on behalf of Claudia and Geoff.

 

I believe that as soon as the board drops below a certain number of people (maybe three in this case?), the organisation is dissolved.

Another charity I know had to stop trustees resigning so that it didn't immediately dissolve but it might have been that all the trustees were resigning, rather than only a critical number.

Usually a trustee waits for their role to be replaced before stepping down for this reason.

 

https://assets.publishing.service.g...ads/attachment_data/file/816777/CC3_may18.pdf

Charity Commission for England and Wales

Guidance: The essential trustee: what you need to know, what you need to do

 

There is now a copy of the statement on Claudia and Geoff's blog:

https://uttingwolffspouts.com/2019/09/04/the-me-patient-foundation-statement/

The ME Patient Foundation Statement

 

This also suggests it could have been under the requirement not to overextend itself.

 

Very sad. The foundation spoke with clarity and purpose.

Always the same damn catch-22, too ill to advocate, which only perpetuates the illness. Even for healthy people it's a lot of work.

 

The ME Patient Foundation website remains online but now carries this announcement:

"PLEASE NOTE THAT THE CHARITY IS CURRENTLY DISSOLVING AND WILL NO LONGER BE IN OPERATION"