To the ME Association UK Board of Trustees 4th Dec 2024

On 20th November, a bedbound Severe ME patient, Dr Alexis Gilbert emailed a letter of complaint in response to an editorial in the Autumn edition of your ME Essential magazine “Animals need to move” by Chair Neil Riley. In just 2 days, it had been signed by over 1000 people, the majority of whom are Severely ill with ME.

Two weeks later, you have yet to dignify this significant effort by many Sick people with a detailed response. This grossly inadequate handling of UK patients’ expression of outrage and betrayal has also been noted by the international ME community. 

Your reluctance to engage with your patient population, demonstrated by the conditional apology statement issued on your website - alongside turning off the comment function on social media - points to a lack of accountability wholly at odds with the role of a national charity devoted to representing our needs. In conjunction with the mocking tone of the original editorial, it suggests a complete lack of humility, or any readiness to listen and serve members.

Mr Riley’s editorial asks why his illness should “stop me making breakfast, answering emails, or taking a walk in the garden”? For the Chair of a national charity dedicated to promoting science around energy-limiting conditions, this demonstrates a staggering lack of awareness about the realities of Severe ME, estimated to affect 25% of the patient population. To suggest that it is a ‘choice’ to stay in bed is a slap in the face to those of us whose chronic oxygen- and energy-starvation is so great we are unable to swallow, digest or speak; those who dream of being able to roll over, sit up or walk to the toilet.

Worse than exposing his incapacity to imagine experiences other than his own, the editorial is an appalling dereliction of duty. Mr Riley says this is only his personal “expression of opinion”, but such a claim is disingenuous when you are writing in your capacity as Chair of a national association in their own magazine. There is a terrible risk that his words will compromise the fragile quality of life of thousands of people with ME: either by encouraging patients to push beyond their limits and risk deteriorating from Moderate to Severe; by endorsing this dangerous advice to the newly diagnosed who might otherwise recover with rest; or by giving ammunition to gaslighting caregivers and doubting doctors.

In his ‘sorry not sorry’ statement about the “undue upset”, the Chair asserts that “as someone who has been severely affected by ME/CFS I do understand fully what life is like for us day in and day out”. Quite frankly, this adds insult to injury. Having demonstrated he has zero concept of the daily realities of Severe existence, Mr Riley neglects to address any issues raised by actual Severe patients, but continues to justify his own blatantly blinkered point of view.

The author of the original letter in response to Mr Riley’s editorial is a public health doctor of 10 years who was working as a consultant in health protection at the start of the pandemic, but has been 99% bed bound since contracting COVID-19 in 2022. Dr Gilbert has been unable to follow up personally because his crash from leading this advocacy has been so extreme, it threatens to lower his baseline even further and destroy any hope of celebrating Christmas with his family. If Mr Riley cannot grasp how this is often the consequence of ‘just writing an email’ for someone with Severe ME, he should not be leading the ME Association.

In acknowledgement of the sacrifice of health made by Dr Gilbert, the very least the Board can do is give feedback on each of the five points he raised. On his behalf, we demand that if Neil Riley won’t retract his editorial - which is diametrically opposed to the science on Severe ME and the ME Association’s own recommendations - he should respect members’ wishes and resign.

To quote his own words from 2019, he can either “get bitter or get better” at being our representative - the choice is his.

Please note that those of us in countries who are not fortunate enough to have well-funded charities to represent our needs are too often at the mercy of the prevailing winds of science, politics and propaganda in the US and the UK. The outlook of an organisation such as the ME Association which is respected internationally will inevitably impact how we are treated by doctors locally.

Please don’t risk destroying patients’ trust that has taken five decades to build. We look forward to you swiftly taking steps to restore our faith in the ME Association’s integrity and working together in the best interests of energy-impaired people around the world.

P.S. As we were about to send this letter, our attention was drawn to another article by Mr Riley, in the Winter edition of your magazine which was delivered to members this week. In it, the Chair’s sarcastic tone reaches new heights of hubris by describing himself as “Chief Complaints Examination Officer”. Either this is a joke, in very poor taste, or Mr Riley is defiantly pointing out that he is responsible for responding to complaints to the ME Association, a clear conflict of interest.

Severe patients demand that our objections to Mr Riley’s comments are addressed independently by the other Trustees. As the CCEO wisely says “...if we fail to deal with your complaints, we’ll lose you and word will spread about our failings.” We trust that the number of people supporting this complaint will ensure that it is considered by the Board before the AGM on 9th December.

PLEASE ADD YOUR REASONS FOR SUPPORTING THIS PETITION IF THE EFFORT WON'T CRASH YOU