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When I got ill and asked my GP about "CFS", he said that diagnosis wouldnt get me anywhere. It does because then at least I know what not to do. Same thing happens with endometriosis, even though there is treatment. Doctors seem to underestimate what it means for a patient to not have a...

He has mentioned "CFS" many times in the media, thankfully, and at a recent press conference by the government the possibility of an "autoimmune process of the brain". He does seem to understand it's physical but stresses the cognitive and "mental" aspects a bit too much (e.g. "depression" and...

Oh I was looking for the definition being used in this! Once again a very uncareful use of the term "CFS". Other than that I do appreciate that more and more studies seem to focus on the systemic effects of endometriosis. There's still this wide disbelief it only affects your lower abdomen &...

What actually counts as a reactivation? Positive IgM? I was told reactivation of the herpes family during other infections or immunological stressors is "normal". The immune system can handle it. Since my ME started with Mono I dont know if that really is the case... I might have had some...

I found that very interesting, too. First thing I thought was that how stigmatized that will make Ebola survivors. And maybe people with other infections that persist longer, too.

Is there any opinion on a maximum when something unexplainable can not be psychogenic? Serious question, where does medicine draw the line? I get how you can sweep a couple of people under the rug. But depending on the definition of LC we're talking about 10-30% of all infected. Maybe more...

Do you have cases with severely affected LC people comparable with very severe ME? (completely bedbound, extreme sensitivity to light, sound, touch etc.)?

In the past, not so good, actually severe misrepresentation. Better now with new chairmen. Edit: But I haven't followed them much since I quit membership a couple of yrs ago. "Deutsche Gesellschaft für ME/CFS" is doing a good job on public communication.

Saw the same from a German patient that's bedbound. Made me think of old Western movies where everything (the Saloon, the town hall etc.) are just a 2D coulisse/movie set. Nice from the front but nothing behind it.

I think Dr Frommhold is the one from the documentary I've posted before. I'm sure depending on the underlying problem lots of people do benefit from physical therapies. It's crucial to filter out the ones with real PEM/PENE right away though to not make them worse. Prof. Scheibenbogen from the...

Cant fully access, but looks interesting: https://www.thetimes.co.uk/article/i-left-a-tap-on-and-flooded-my-flat-long-covids-dementia-symptoms-in-germany-d9sjg8r5d

Our Ministry of Health has put Out this little clip on LC. Good thing is, they usw the patient led term (somewhat acknowledging their lived experience, I guess?). Bad thing is, it's supposedly last "for a couple of weeks". No mentioning of pacing, further investigation of organ damage etc.

Maybe ME has such a bad reputation in the UK that with LC you under no circumstances want to be associated with it. Even when you sit in the same sinking boat.

With his history, I just read it as something psychosomatic doctors like to say "Of course your symptoms are real." At first as a naive patient you think you're being taken seriously but what it means is "they are there but not of physical origin."

This is in German, a whole documentary on LC with different severities. A young hockey player that never had any symptoms whatsoever & then was dianosed with Covid myocarditis in a routine checkup. He was put on hold for 2months from training (and any exertion) before being allowed to go back...

To my experience, CFS is used very incorrectly in the field of endometriosis. Not out of bad intentions, many women do suffer from overlapping conditions but they often get put under the "Fatigue = CFS" umbrella. I have several women in my self help group with "CFS", non have PEM. And here...

Sounds like they dont understand how GET and pacing is mutual exclusive for people with PEM. And looking at what SW et al. are saying publicly it really is confusing.

Inhaled budesonide in the treatment of early COVID-19 illness: a randomised controlled trial "Conclusion Early administration of inhaled budesonide reduced the likelihood of needing urgent medical care and reduced time to recovery following early COVID-19 infection."

It's a pain of hot, burning quality down my left leg, surgeon said it's most likely growing into a nerve there. They couldnt remove it all (and looking back I'm glad they didn't try, who knows what they would have damaged).

I guess one has to choose a poison here. Unfortunately, my neuropathic pain was never much impressed by anything other than antidepressants and Pregabalin :(