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Right at the beginning of the outbreak I had a look through the 3 ME/CFS papers from China around the SARS outbreak. They had about 50% of all sufferers with lasting symptoms and long term it was 10%, there was no one recovered years later, they called it what it was from the outset they didn't...

I have a friend who is a union rep, they are seeing a lot of people struggling at the moment with brain fog. Last year one person uttered the words Long Covid and was looking for accomodations on targets and got fired pretty quickly. So everyone since then has refused to say the words and are...

If there was going to be one change that might save some lifes and disability its actually getting doctors to accept that these conditions are real. That is 95% of all doctors in the world today will dismiss patients with these conditions as fakers. Expecting some massive cross department...

Its an interesting video but alas if any of this is the root cause its not a hopeful outcome really. If the pituitary gland is under producing due to damage and disrupting the HPA axis as a secondary adrenal insufficiency there isn't a whole lot to do. If the glands are damaged a top of the...

Rehabilitation is just a euphemism for exercise and CBT and relies on the BPS model. Not surprisingly its failing Long haulers too and I wonder how many of those drop outs got worse?! Its a travesty these studies are getting past ethics reviews given all the guidance put out about Long Covid...

I had some hair loss initially and rapid onset of greying afterwards. It is part of the early disease I suspect, its not well documented though I guess its relatively rare in ME/CFS patients (but then its pretty rare in Long Covid too comparatively).

I am a bit concerned about some of the questions in this one. There is a heavy "your just depressed really" bent to some of the questions and in a lot of cases you can't say that actually all care has been completely cancelled by the NHS, you only have the option of very poor rather than non...

By the time anyone tested by CRP and ANA and D-dimer I had nothing of not, if anything my CRP was lower than usual. I also think all this elevated Cortisol being found will also after a year or two likely disappear as well, these are present early in the disease but will disappear in the long...

The sins of the past repeated with ME/CFS. Given the response on the medicine reddit sub on these types of conditions and their own co morbidities there is no question this is happening and it appears to me to be how 95% of doctors view their patients, as fakers. Medicine appears to not yet have...

450k very severely impacted and newly disabled with long covid in the UK, 500k newly unemployed. I wonder what could possibly be causing all this malingering?!

I think it was a bit of a missed opportunity to set the historical context of the level of prejudice and misinformation on the disease. Personally responding to that I would want to fix the timeline where the disease was named in the 50s and put the likely historical context to 100s of years and...

Does anyone have any data on the actual number of UK ME/CFS patients with a diagnosis? I am aware of a few studies looking at about 0.2% of the population and about half that meet the Canadian criteria but I can't see to find information on how many have actually been diagnosed other than the...

GET for Long Covid deconditioning, despite all the guidance against it. Sigh no lessons whatsoever have been learnt.

This is outstanding, the videos and pictures are brilliantly accurate portrayal of the condition and are miles better than the garbage tier stock videos and images that most are using. This is an accurately portrayal of what the disease and its sufferers look like, because they are real. This is...

The way I view this is similar, up until October 2021 in the UK believing ME/CFS was anything but deconditioning and psychosomatic was a conspiracy theory position. No reasonable doctor or person should believe it, all the research and all the official guidance put out by the NHS including on...

That is really interesting. I definitely have symptoms on the day I over exert that results in feeling a small headache and then having severe insomnia when I try to sleep and I know the next day is going to suck. Then the next day I have severe headaches and fatigue. I haven't ever separated...

The Spoonie discussion has hit reddit medicine and its not a good look once again. Widespread belief in mental illness, once again its only flaired commentors (since its regularly brigaded when they do this, also means most commenters are flared/real medical staff). ()

I spent a lot of my earlier time with ME/CFS doing resistance training and it was manageable, I had to be very careful still a 30 minute work took 3 hours as it took a lot longer for my heart rate to drop and I had to sometimes cut it short but I was following doctors orders. Then I caught Long...

https://www.news-medical.net/amp/news/20210122/Study-examines-risk-factors-for-developing-MECFS-in-college-students-after-infectious-mononucleosis.aspx -> Patients getting ME/CFS did not start out with more stress. What studies have been done on personality type and stress into ME/CFS have come...

The drop out rate on Pace and the lack of follow up as to why remains a giant red flag around PACE. Some of the people who did drop out explained it was because they got too ill to do it further, I find it hard to believe they didn't try to tell the researchers this. This means the reasons for...