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Forgive this possibly very ignorant question but: Would it be accurate to say FND is basically a way to diagnose dysautonomia, whilst blaming it on the patient?

Is there anything we can learn from that? I looked into it a bit and chronic-lyme disease seems to be dismissed while post-treatment lyme disease is documented and acknowledged, what gives?

Oh my bad yes thats what I mean (sorry english isn’t first language).

Sorry I don’t know if this is off topic for this thread but we have the opposite problem going on in Switzerland. ME/CFS is not a recognised condition here and there are virtually no experts or anyone with experience except psychologists. What the Long Covid clinics do is whenever they see...

I’m glad you figured it out. That sounds like it would have been really stressful and tough. I permit myself to ask if you would still consider you have/had “IBS” since you found two intolerances/allergeries which were the driving force behind your symptoms? I feel like there is definitely...

(I couldn’t find a thread dedicated to IBS so making a new one). Based on my knowledge of ME I’ve always assumed IBS is some sort of disease or something where no pathology has been found yet. However when I go online the only thing I can find is “Functional Gastrointestinal Disorder” which, as...

How have I never been shown this before; amazing resource. Thanks!!

Hi, I usually can only use my phone for a couple minutes every week or so but sleep deprivation and an unknown allergic reaction gave me lots of adrenaline. I am using this to request help to compile a couple resources that will help my parents care for me. Obviously I am super thankful to...

Huh since I am very severe too, maybe it has something to do with severity?

No way so the most notorious of these evil invisible hands behind the media people has funding links to BPS research, who would have guessed.

Hi Nellie, It is oxygen saturation in the blood :)

I’ve never seen this mentioned anywhere else but here goes: I track my spo2 levels all the time (curiosity I guess) and ive noticed something interesting: When I feel like I’m overdoing it cognitively my spo2 jumps to 99% When I feel like I’m overdoing it physically my spo2 dips below 94% When...

yeah they liked the content but thought the “style” of the website was outdated… (tells a lot about their priorities)

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...