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Or it might be more effective and kinder to our fellow creatures and planet to start doing things very differently.

Am I being sexist, here? We have money to spend on this and not research that might actually alleviate symptoms if not cure? We mustn't be dualist but it's okay to talk about dual identities? WTF? Is it not the change and how an illness affects one's sense of identity, anyway? Women go...

Yep. I had a go. Same reaction. The takeaway I got from the limited bit that sank in - there's a double whammy to the injustice- epistemic - in that because we're ME patients we're no longer credible witnesses to our own experience. hermeneutic - in that there aren't any tests available and...

There are eye or eye movement abnormalities with ME patients though? I seem to remember research on it, but haven't the wherewithal to go hunting. While there is a!ways room for improvement in education, and in our case plenty of it, I think having a speciality where they have a test that...

How does she know? Did she test positive? There's such a thing a mass hysteria....there was an outbreak years ago at the Royal Free I'm told....:sneaky: For the record her medical history is none of my business. My post is less to do with her than to do with illnesses for which there are no...

Nothing against Unrest but Voices from the Shadows and the Dialogues videos are much stronger, in my opinion. They also reflect what reality is like in the UK and local context can be important when assessing the impact on patients and the support they should be able to access but are denied...

I wish Clare Gereda a full recovery as I wouldn't wish ME on anyone. It would be nice to think that she might take the time to reflect that how she felt hardly compares to the suffering of many ME patients for decades. Perhaps she would like to imagine how it would feel to be trapped in that...

Yes. I can see where @Cinders66's is coming from. While on the surface it looks like a step forward in patient engagement it actually keeps them in control of the process. The other thing that irks is the arbitrary top 10 wish list for want of a better term. What if several of the items in...

I think it's worse than disappointing - so much background "noise" of advice is confusing and makes it harder to identify a reliable source for sound,sensible and reasonable advice. It's all very well for the worried well to be running about like headless chickens but we don't have the physical...

I'm not terribly impressed at firing a generic list of supplements at people either. Not only is the science not necessarily proven, they may not be necessary for everyone and therefore be an extra financial burden. Taking some supplements unnecessarily or in the wrong dose may cause other...

Again with the "fatigue" :banghead::banghead::banghead: I agree @alktipping, but whether we're talking "fatigue related" or "illnesses that have fatigue as a symptom" that's a vast range of conditions. Really are the going to cover - anaemia, hypothyroidism, heart disease, MS, depression etc...

To be honest @Barry and I don't want to worry you, but no I very much doubt they will. They will only provide the basics of health advice and nothing else. There are huge gaps in the system between medical, social and personal care and even when you can get something sorted they are really...

When I was looking into which HR monitor to try a couple of years ago I spoke to Apple's very helpful support team. The guy I spoke to made it clear that their devices weren't for medical use. We had a chat and I explained there was a huge market out there for people who couldn't necessarily...

I disagree @Gigi300. There is a long and documented history of the disease being downplayed and deliberately misunderstood. I agree it is a complex illness, but it certainly isn't the only complex illness. It's just one of the most neglected ones because of politics. Edit - sorry but I'm way...

In a word - Politics

My husband's employers have just changed the level of approval needed for non emergency time off. For now, employees who are planning on travel outside the country need to clear it ahead of travel, otherwise if they get stuck abroad they won't be laid for the time they miss. No visitors...

There's a huge issue with this them and us kind of division - it's false. Many people rely on parents or older relatives for childcare or dropping children off & collecting them from school. Many people are still in the workforce in their mid 60s and onwards. Underlying conditions are often...

I don't know. I'm talking about gastroparesis that has to be managed on an ongoing basis. At the mild end it may mean managing by diet but at the more severe end we're talking feeding by tube.

One thing that does occur me about corona virus, & this might sound strange, but I may not know if I get it. That bothers me because I have some famIly members who are in at risk groups and others who take immunosuppressants for example. I don't really get colds or flu - I appreciate this...

Is @dave30th crowd funding this year? Apologies if this has been asked and answered already.