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Can someone expand on this? I am not hugely familiar and this stuff with Ashworth seems really worrying. :(

Can anything be done about this? Editors should be made aware. Determined individuals with agendas like this should not be able to publish hit pieces on patients using obscure discredited "sources" in the name of contrarianism. It violates editorial standards. I suppose editors figure it's...

This is amazing.

To me this piece is bait for the US "left" tendency to produce contrarian think-pieces usually written by men such as Yglesias, and it seems he has already chimed in. These were the people who told us that it was "irrational" to continue to wear masks following vaccination in 2021 and started...

This one is truly the worst one I have seen for a while. Yawning?? Fake yawning? I would write to them, but cannot at present.

I feel like only something like the ACT UP protests/etc decades ago on AIDS are going to get anyone's attention to solve this mess.

I received my confirmation that the kit was received by Decode ME. It took between 3-4 weeks, I think. I thought the message was worded in a kind, thoughtful way and was pleased to receive it. :heart: Thank-you.

Does anyone have any thoughts on this?

Does anyone know if they will make the COVID jabs available privately in the manner of flu shots and if not why not? I don't really understand this. Thanks.

What about in the UK, though?

Has news of the study been shared adequately in Long Covid networks in order to recruit the LC MECFS patients? I have seen a bunch of ME folks sharing this but nothing from LC people really - is it just me? My kit has arrived but I've not done the sample to get it sent off yet. Encouraged by...

I wonder what would have happened if covid regularly produced more "cosmetic" effects.

I wonder how people will react if it comes to the US, now that everyone is ignoring covid, a much more transmissible disease. Will there be Ebola hysteria like last time nonetheless? It was constant coverage. Will they ignore it like covid this time around?

They might do a correction/edit if someone pointed it out to explain the issue. I think a lot of people just write "chronic fatigue" unthinkingly and are totally happy to correct it.

I am very excited about the book and hopeful about its effect on the publishing industry/ potential knock-on effects in terms of disability narratives and stories. I am also personally very pleased for Frances Ryan as she is always so empathetic and engages in a thoughtful and kind way with...

I would be interested in how many of us have lower than usual healthcare use due to avoiding healthcare due to bad experiences/futility, inaccessibility, or being neglected by practitioners. I have avoided treatment for injuries and so on. Maybe that would be considered a good thing by some! My...

There is hardly any good information on this website. :(

Unfortunately I don't see how anything positive could come from this kind of framing, particularly in the context of potential couples' counselling where one of the partners has ME/CFS. "Perfectionism", "personality" etc? This seems to go against the couple really dealing with the reality of the...

This is just so sad. :(:broken_heart:

It's so depressing because they have been thinking about LC and disability so little that they need a whole separate concept and talk of a "parallel pandemic" to discuss what has been happening all along and everyone refuses to acknowledge - any outcome other than death or everything being...