The ME Patient Foundation Statement.

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.

 

  1. 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.

 

  1. 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.

 

  1. 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

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