Today (8 August) is Severe ME Day. It's a day when we remember people who've lost their lives to ME and think of all those who are still suffering from the most severe forms of #MyalgicEncephalomyelitis#SevereME#severeMEdaywww.dialogues-mecfs.co.uk/films/severe...

Severe & Very Severe ME / CFS

When you get #MECFS you also typically suffer a catastrophic loss of trust in the healthcare system. The safety net you thought was there doesn't exist and you keep on falling and falling.

People with #MECFS don't choose to end their lives because they're deconditioned. They do so because they experience unbearable suffering from a physical condition for which there is no cure and which incredibly many doctors still know nothing about. Condolences to friends and family.🕯️

I recently obtained a printout of my medical record to renew my Blue Badge and somewhere in it my GP has written "POTS not typical of CFS", even though NICE recognises it as a common comorbidity and 3 separate ME specialists have diagnosed it. Fvcking useless. 🤦 #MECFS#POTS

Imagine discovering those who you thought were meant to take care of you don't actually care and don't even believe you. This is the reality faced by nearly all #MECFS patients when they approach their health provider for help.

I'm sorry to say that if your #LongCovid#MECFS, no one is coming to save you. It's very unlikely you'll even see a doctor who believes you're unwell. Be prepared for your life to change utterly. Do everything you can to avoid getting it.

With the discredited Lightning Process once again the focus of media attention, it's a good time to reshare the words of Prof Brian Hughes. #MECFS#LongCovid

Somebody nominated me for a healthcare award for the work I’m doing for people with long covid and ME/CFS. I would appreciate if you could vote for me. Not because of me but because long covid and ME should be on a stage in the limelight in an evening dress with a blue rose. viktor-award.ch

Press briefings about #MECFS should emphasize the severest form of M.E. I'm not sure how it's come about, but my sense is that charities have sometimes understated its severity, as though they don't want to frighten anyone. We should be scaring the bejesus out of people. M.E. is terrifying.

In its mildest form, #MECFS is still widely misunderstood as fatigue, despite being debilitating. In its most severe form, M.E. is ignored by medical professionals and rarely represented in the media. Patient organisations have got to get better at communicating with the media.