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It sounds terrible I hope this will get better for you. And that you’ll find something that helps. I heard this before and inquired about the vaccine but the costs are very high unfortunately.

I would like to suggest to implement using stages/phases from 1 to 5/6 especially since there is no established term, maybe we could start a better description. Stage 1 being mild, stage 5/6 being profound. Edit: Grammar/ words

I am conflicted, on the one hand @Jonathan Edwards Edwards has very sensible points. On the other hand I wonder if this is one of the rare opportunities to get attention for ME with the parlement and therefore this is the time and opportunity to request funding. I also sense that #thereforME...

Great idea! Are there any ones in existence now, that are good for that?

That is so nice of you to say @Utsikt, it means a lot :sun:

Sorry you have to deal with this, must feel unsafe.

This is very relatable. I need this forum to meet with other people who can relate to me and the things I have to deal with. That is very positive. The injustice we have to deal with is also very prominent here and really can deflate me sometimes. So some days I try to ignore that and find...

The whole process seems so nebulous, I hope it will be a good plan, but I fear it will not be.

I mean more of a research library of the research that has been done into MEcfs. The link I posted on cancer research seems to be more of data elements, this is not what I meant. Apologies for the confusion.

I tried to look him up. At one point he was in the steering committee of mecvs foundation in the Netherlands. At his insta (not sure if it is him) his last post was in april 2024. I do not have insta though.

Alison McGovern The Minister of State, Department for Work and Pensions “[...] Appropriate work is generally good for health and wellbeing, so we want everyone to get work and get on in work, whoever they are and wherever they live.” If work is so good for health and well being, why have they...

Good points; Sometimes I have seen researchers say things like, ‘considering the research in ME’, and on that basis they make research decisions. I wonder if they do a pubmed search or is there a secret database somewhere haha. It would provide a complete overview of what studies have been...

I am also looking for a new one; my parents had a wool one that was lovely breathable and warm. Downside for me was that it was too heavy, so it exhausted me to just turn. It is also not washable I thought. Silk sounds light and breathable, but can you wash it? The only one I saw was very...

Question; Is there an archive/database containing all research on ME? I found this data archive for cancer it looks very good (for someone who has no science background). https://datacommons.cancer.gov/cancer-research-data-commons Is there a roadmap/standard in general for diseases that...

These are not the only worrying members. I am horrified.

I wish instead of mild (which isn’t mild at all) moderate and severe we would use stages, stage 1 to 5 or 6 and maybe use the scales of Whitney, with some slight adaptations.

Am I right in thinking that FOI is not applicable for Cochrane? Because they are not a governmental organization?

I wonder what influence their member structure and funders have. Their researchers also become members. And are involved in decision making. Their funders are a lot of governmental organizations who have an interest in keeping exercise as treatment. In my view not a healthy organizational...

Since so many millions have already been spent on psychoquackery it isn’t bias, they have had their fill and biomedical needs to keep up.

1) set criteria for the funding for example - biomedical research - no involvement of bps researchers - include patients in priority setting/ research goals - etc 2) choose a medical steering committee of biomedical researchers experienced in me research who can evaluate research proposals 3)...