@PaulGarnerWoof Hi Paul, thank you for sharing your story I am sure it will help many. I am very sorry to say that when I read your first blog ending with "and today the disease is lifted" I thought 'oh poor you, just you wait a few days'. I am very sorry but what you describe sounds just 1/
@PaulGarnerWoof horrible and just like ME. I got ME overnight 10 years ago when I contracted glandular fever and what you are experiencing sounds so similar. E.g. I did too much housework last week as was feeling better and this week I feel like I am near death (though I know I am not). 2/
@PaulGarnerWoof Please do listen to Dr Shepherd and be strict with your pacing. I was undiagnosed for 3 years and thus not given any pacing advice at first, and now I cannot work and need s wheelchair to leave the house. ME idea serious thing and is not just harmless fatigue - it can cause 3/
@PaulGarnerWoof permanent disability. I am not saying this to scare you, but next you have a first degree relative with ME you are likely genetically predisposed (it often runs in families). You have to really look after yourself as you have been. I really hope you recover soon. 4/
@PaulGarnerWoof For those of us who didn't get ME from COVID-19, we have usually not been taken seriously. Our lives have been very difficult because we are stigmatised and marginalised, & often ignored, dismissed, or given harmful advice to try to exercise out of it which makes us more sick. 5/
@PaulGarnerWoof If you do recover, & when you have the energy, could you please be an advocate for us? We have very few in the medical professions who speak up for us and our needs. We are often painted as hysterical anti-science activists in the media which doesn't make our voices credible. 6/
@PaulGarnerWoof We really need people whose voices are taken seriously to speak up to the medical community on our behalf, and you would be a great advocate. We want good science, understanding, medical care, & treatments that don't harm us or treat us as if we are psychologically misguided. 7/
@PaulGarnerWoof After this experience I am sure you have learnt that post-viral ME is a very real thing, and that it is a challenging physical problem not a psychological problem, and not just "being unfit". As you have learnt it requires careful management & strictly limits daily activities. 8/
@PaulGarnerWoof Apparently ~80% of GPs still think it's a psychological illness and that patients need to be encouraged to push themselves. This is a source of great despair for the patient community because it means we don't receive the understanding & support that we need from our doctors. 9/
@PaulGarnerWoof Anyway, I will stop exhausting you now. Thank you for sharing your story & I hope you recover fully and soon. Please don't forget us, & please educate the medical community when you are able to. I waited 9 years for treatment & I don't want others to go through that. Best wishes.
@PaulGarnerWoof Oh and one last note: you differentiate ME from COVID by saying COVID comes with other dangerous complications. Worth noting that ME can cause dangerous complications too e.g. gastroparesis & loss of ability to swallow in severe cases which some have died from. 1/
@PaulGarnerWoof Although ME is rarely life threatening in the short term, long-term prognosis is usually not good. Studies have found that ~95% of ME cases face lifelong disability, people with ME die younger & at higher risk of suicide, cardiovascular death & cancer, and have lower quality 2/
@PaulGarnerWoof of life and higher levels of disability than many other serious illnesses such as multiple sclerosis, cancer, heart failure, lung disease, etc. ME comes with cardiovascular, neurological, immunological & metabolic dysfunction. So it is a very serious & disabling disease. 3/3.
