HUGE THANKS TO EVERYONE WHO USED PRECIOUS SPOONS TO SIGN THIS PETITION. PLEASE HELP US GET TO 1000 SIGNATURES WITHIN 48 HOURS!
Follow-up email sent on 6th Dec:
Dear ME Association trustees,
We have not yet received any acknowledgement of receipt of our first email - please confirm if this has been received, and to whom we should be addressing further correspondence?
Please note that more than 900 people have signed a petition in support of the second letter of complaint in less than 40 hours, so it is very likely that this will reach 1000 signatures in 2 days - the same level of support as Dr Alexis Gilbert’s original complaint garnered 2 weeks ago.
A list of signatories is attached below. Please note that while the vast majority of them are from the UK, there is a substantial percentage from countries across the globe, including South Africa, Mexico, Canada, Germany, Finland, Australia, Netherlands, Switzerland, New Zealand, Ireland, Austria, USA, Sweden, Canada, Japan, Czechia, Poland, France, Denmark, Spain, Belgium, Norway, Portugal, Chile, North Macedonia, China, Singapore, Rwanda, Malaysia, Italy, India, Serbia and Puerto Rico. This reflects the influence ME policy in UK has on medical experiences in the rest of the world.
Given the scale and reach of response in just 48 hours, we urge you to consider that these editorials by Neil Riley are bringing the organisation into disrepute, which under your Articles of Association (27h) is grounds for immediate termination of a director's appointment. Please advise if this will be discussed by the Board - in the absence of Mr Riley, given the conflict of interest as per section 17.7?
In the Letters section of the Winter edition of your magazine, it is apparent that Mr Riley’s Autumn editorial is, at best, causing confusion about whether people with ME are capable of "making an effort”. We recommend you read the comments section from the petition (attached below) for some uncensored responses on the impact of his disparaging comments.
Bedbound Severe and Very Severe patients standing up for their right to represent their own reality in the only way they are capable - online - are dismayed at continuously being contemptuously referred to as “keyboard warriors” by Mr Riley (pg18). The ME community’s trust has been irreparably damaged by his disrespect and his position as Chair is untenable.
We hope you will consider this petition and Dr Gilbert’s original letter as soon as possible, with Mr Riley abstaining, and look forward to hearing from you.
Yours sincerely,
Fran Haddock, Sam Pearce and Alexis Gilbert on behalf of the
Severe ME Advocacy Group