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I noticed the app had a reading list where they had some newsletters and stuff about long covid and me. all of which are nice but no where near having as high quality or being as comprehensive as this forum’s news in brief. I mentioned to creators of the app and they answered: “Interesting. A...

To be honest apart from a warning sign when I’m doing very poorly and get a very poor morning stability score, the main use of the app is collecting data on symptoms and having a handy way to go and look at past data.

How do they justify very severe cases I mean in the case of people like whitney or merryn crofts etc. Even just severe people who use bedpans and stuff, its just too much to psychologise. And at that severity you can start to suffer from paralysis and gastroperisis etc. Like are they really...

Oh my god thats the website I got referred to by the neurologist who told me I was “doing this to myself” to “ditch the wheelchair” and that my ME/CFS is caused by a FND and I need to do “lots of sports” and get “lots of therapy” to get better because I clearly have some trauma deep down causing...

I wish s4me popped up higher on google results. Took me a while to find it when I first started religiously reading ME literature.

I just don’t understand why there is so much effort to discredit ME. And compared to the horror that this disease is the “credit” or aknowledgment we get is extremely small. Can someone explain to me where these all powerful invisible hands are coming from. As someone who pops into this forum...

Anyone feel like their ME is literally just PEM, and there is a constant level of PEM that comes from like being alive, which causes the “normal symptoms”, and it can be worsened by overexerting. Whenever my severity got worse, it felt like it was just extra PEM that never went away. My OI and...

My guess is, when you do too much, your brain releases adrenaline to keep up, and adrenaline is known to create a “warm” feeling as it makes blood go to the skin. Similarly to how some people blush (face gets warm) when they are embarrassed because they then release adrenaline, same mechanism...

They must! because as someone in Switzerland I get this as the main description: “ A disease characterised by profound fatigue, sleep abnormalities, pain and other symptoms that are made worse by exertion. Chronic fatigue syndrome occurs more commonly in women. The cause of this condition is...

I appreciate the answer, thanks you. I would say though that Mayo Clinic (which I believe is the only source cited) has changed their stance on ME quite drastically recently, and that the past few years have seen a very positive shift in public and medical perception of ME, so maybe there is...

When you search me/cfs, cfs, me etc. on google there is a popup info that reads “Chronic Fatigue Syndrome”. The only medication listed under the “Treatment” section is “Antidepressants”. The “Speciality” section reads “Primary care, Psychology, Clinical Psychiatry”. There is a feedback section...

I honestly don’t understand why researchers are so obsessed with SSRI’s in LC (and ME/CFS), as with GET/CBT if they made a large positive impact we would definitely know by now.

My PCP put me on SSRI’s to help my LC even though my mood was fine and I was feeling as mentally good as you can given the circumstances. My symptoms worsened, she kept on dismissing it until testing showed I developed serotinin syndrome. Only time will tell but i think that permanently worsened...

Yes lets bombard with ME and LC :)

this is amazing! how do we know what happens next though? What are the next steps? I’ve been disappointed too many times with ME and im terrified of a “poop out”.