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As a sidenote appreciate them using proton which actually has decent privacy. I hate having to basically hand over my data to google to see stuff on google drive. So cool to see researcher taking that issue seriously. Agreed Generally they have been quite good in my view. But that doesn’t...

Long term update on this case is, I’ll use the twitter handle as to not doxx, Abysspearl eventually went to hospital and it arguably made things worse doctors tried to prescribe GET etc, after a while was released from the initial hospital mistreatment. But now recently they’ve been admitted...

Severe ME seems to be more a reflection of degree of impairment than of symptoms. A person who experiences severe delayed PEM mainly when sitting up in bed very likely has severe ME. A person who experiences severe delayed PEM mainly when biking to work very likely doesn’t.

Moved from News from Austria and Switzerland to news from Germany Interesting. Thanks for sharing. https://en.wikipedia.org/wiki/Brigitte_(magazine)?wprov=sfti1#Circulation Edit: Done Apparently it’s german so perhaps mods can move to news from germany thread?

As a very general and possibly quite oversimplified „anecdote“. Personally the sort of impression I‘ve gotten is that german advocacy felt as much on the offense as on the defense. UK advocacy feels much much more on the defense. (Not to fault people in the UK at all. I would be/am on the...

For me it was definitely both. Before the illness I had a bit of a history of IBS style symptoms. But at the beginning of my illness (or where I draw the line, its pretty arbitrary), my “IBS” symptoms worsened and on top of that I got completely new upper stomach symptoms that were frankly...

Agreed. I think that sort of critical mass is something that lacks in French, Spanish, Italian. Unlike northern europe or the German speaking world most people do not speak english so there needs to be a critical mass before it becomes a “thing”. Not enough people have been diagnosed and given a...

Yes the list provided by the LLM summary IMO doesn’t include anything unique to Germany. Though perhaps Germanophone places have done it better. What I noticed being different compared to say anglo places is that the proportion of ME/CFS coverage in the news / social media etc had a far higher...

it’s unclear to me based on the phrasing if they mean the PI-autonomic dysfunction or the infection itself may be casual?

This is a bit long. But its the context all my deteriorations and improvements. I got COVID. I was mostly fine ish. Though I had bad stomach symptoms. I also for the first time in my life noticed that “pushing through” (I was doing pre-Op physiotherapy at the time) stopped working. I tried...

To me it depends entirely on how they measured it. People with very mild ME/CFS or idiopathic chronic physical symptoms are more likely to develop Post-COVID Conditions I believe that’s established. If pw very mild ME/CFS and idiopathic chronic physical symptoms score higher on average on...

I think this is an important study to deconstruct. Because the media response to it is “brain retraining changes the immune system”. Thankfully, this study is fairly easy to deconstruct. It’s a failed trial with a ribbon on it. So 3 primary outcomes (1) So outcome (1) failed (2) So outcome...

Oh I’m not arguing those improvements weren’t legitimate. I believe they were. I’m just not convinced we can know of any causality. Even top researchers administering the treatment themselves like Fluge and Mella can’t tell.

1-2% “superresponders” sounds about on par with general chance of random recovery and attribution to the drug?

The institutional void. This keeps on happening. We make noise about it. A couple higher ups acknowledge it if we’re lucky. Nothing changes. It doesn’t feel like the system is broken. It feels like the system doesn’t care, doesn’t exist to care. I sometimes wonder if Simon being on the board...

I agree, I think social science people getting interested can be valuable. But they need to (1) Understand anecdotes mean basically nothing in medicine (2) Have the humility to realise they aren’t someone who can magically find insight to create a middleground in a deep, technical...

Well personally I think it was something interesting to bring up it made me think of assumptions behind my language use and personally I like that I find it interesting to rethink.

I personally find science to be often an unhelpful term without distinguishing between the institutions academia etc. Science as in academia and the research industry. And the methods. As in science as a method of inquiry and knowledge building. As people on this forum are all too aware of...

Good question. As a related one. In other stochastic illnesses that are often lifelong but still have some spontaneous recoveries does it follow similar age - severity patterns to ME/CFS in recovery?

Also sorry to double comment but something I‘d want more awareness of in the field is the methodological ups and downs of questionnaires. So maybe a questionnaire themed one. What place do they have in ME/CFS research? What ones are commonly used? What problems do they have (DSQ, HADS, CSI…)...