Thread by @8Homeslice8

@amyismall Thank you for sharing your story and I'm sorry you have been having long COVID - it sounds awful. Yes exactly - with ME you can get so weak that you can't move your face muscles to speak, or so exhausted that sounds become too much to process so they are painful... 1/

@amyismall I think there's a lot that can be taught about ME at least, in terms of what we do know from biomedical research, and some good tips for management and ME-friendly care e.g. pacing, low sensory environments, concise communication with written bullet points of instructions, 2/

@amyismall No music in the waiting room, allow patient to wait in a quiet room if possible & where they can lie down if needed, offer phone calls & home visits if patient can't come in to the surgery, assess and treat orthostatic intolerance, treat pain and sensory issues where possible 3/

@amyismall Treat gastrointestinal problems, treat sleep problems... Even just being compassionate and checking in on the patient regularly can really help with isolation as lots of ME patients are isolated as unable to socialise or have lost friends & family due to stigma 4/

@amyismall Not trivialising the condition or assuming it's a behavioural/psychological problem, referring to wheelchair services, meals on wheels, social care, occupational therapy assessment for adaptive equipment at home... 5/

@amyismall ...providing evidence for reasonable adjustments at work and school/university, providing evidence for the DWP where the patient can't work... The NICE guidelines say that ME patients should have a management plan containing certain things, but most don't have one 6/

@amyismall Teaching about why CBT & GET can be harmful, from an ethical & biomedical perspective (there's lots of peer reviewed literature on this to draw from). Most ME patients feel abandoned, stigmatised & even abused by the medical profession which is tragic. Most are afraid to 7/

@amyismall seek help due as most healthcare professionals are not educated re. the reality and biomedical research on ME/CFS but have been taught it's a psychological or behavioural problem, a personality flaw, needs exercise & psychotherapy etc. so patients feel very unsafe in their hands.

@amyismall There is so much that a GP can do to help an ME patient, even though there's no cure. And lots that trainee doctors & other HCPs can be taught that is currently not being taught. It's all in the published literature - the CDC website has a lot of good info. The UK is just very 1/

@amyismall backward in this regard. But there's a lot of useful stuff that can be learned from the US where they have more biomedical research centres and specialist biomedical clinics. Most patients just want acknowledgement, compassion & practical support + meds for some symptoms 2/

@amyismall While we are waiting for the science to provide more answers.

Sorry for the essay - hope I haven't exhausted you!

There's lots of legitimate info about ME that's not taught in the UK medical schools but can be found at the CDC website, 2015 Institute of Medicine report, etc.

@amyismall Here are the links I mentioned:

cdc.gov/me-cfs/healthc…

nap.edu/catalog/19012/…

Also this new CPD for UK GPs:

studyprn.com/p/chronic-fati…

@amyismall Also useful is the international consensus primer:

investinme.org/Documents/Guid…

@amyismall I am sharing this info & such a long thread because a % of long COVID patients may end up with ME/CFS and the UK is not great at dealing with it, but there's a lot of info available to learn from, and ME patients are so keen to educate people and to be heard as we live this!