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Yeah it was more stigma and blame with HIV/AIDS. That continued for a long time and in many parts of the world or in certain communities it still does. An example that no amount of biological evidence necessarily overcomes some of the more unpleasant attitudes people have.

The BBC South Today video for this was posted by @Adam pwme too

Yes anything trying to look at similarities in the pathology would be a very bad move, While awake in the night these teo did pop into my head Regularly Ignored Diseases as they’re also things we want to rid ourselves of. Commonly Misunderstood Conditions just had a nice symmetry to it. It was...

A few people contacted them as outlined in the post from @Kalliope and the earlier one from @Lou B Lou but Naomi Harvey and Long Covid Advocacy seem to be the ones who received responses and shared them, looks like they just emailed support@pulse365.uk

Here’s the event page https://events.cogora.com/pulsevirtual-public-health-and-chronic-conditions/agenda Which as of now has no mention of a session by Dr Miller although still lists him as a soeaker Prof David Strain who has been in recent NHS training materials IIRC Is presenting a session...

AfMe have a post on the appointment here https://www.actionforme.org.uk/new-minister-for-public-health-and-prevention-appointed/ And there’s clips from a speech in the HoC she gave posted by @Adam pwme here https://www.s4me.info/threads/broken-battery-updates.49168/post-678661

In terms of lobbying and working with politicians or even in sear hing for funding I think it’s potentially counterproductive and very risky. Charities and some others seem to think there is strength in numbers or something and I can see the attraction when there are allocated pots of money to...

Exactly. Few other diseases are treated like this. Many are not well understood by the wider public, people often feel awkward talking about things, there have been some conditions like HIV/AIDS in which people have faced stigma or blame and there are many chronic conditions which don’t get the...

Here’s the template letter mentioned in the post above, I thought people may like to read it

No doubt this will reinforce his ideas about negative messages propagated by some organisations and websites, perhaps he could do with some multidisciplinary help to reframe these unhelpful beliefs? I’m confident that with the right mindset he could be rehabilitated and live a better more...

Really interesting. If it comes to light that he’s been promoting this training and implying things he can’t back up… that wouldn’t look very good now would it

Interesting. Yes it could be. Either misdiagnosis or there may be some shared biological elements, but they seem to me to be very distinct conditions. Just my experiences though. I had a good decade between my depression/anxiety and ME/CFS when I was out in the world.

And so sorry you went through that. The psychological side is something I had more of a problem with as time has gone on, both because I do get low and angry and scared (but it’s usually with the medical and wider services and their failures than anything else) and because of increased attempts...

Non twitter link (nitter.net)

Yeah, I even questioned my own understanding but oddly luckily had been through a long period of clinical depression (which I was told by some I wouldn’t ever fully recover from but did!) so could see the differences. I’ve accidentally become more of an expert on both the conditions they confuse...

This. 100%

I was thinking about hope recently and wrote this, it probably fits in this thread The cruelty of saying we could have the thing which we most want if we only wanted it more. Most of us want the simple, normal things of life far more than any healthy person will ever know or experience. To...

To play devils advocate, do we know this is part of the official delivery plan? Or someone trying to push their own agenda and make their approach look official?

Aha! Thank you. I deleted another post I had made, sorry my brain is fuzzy and I was referring to someone with the similar initials but a different person. Please ignore me.

Doesn’t it have just as much chance of muddying the water and contusing pateints, researchers and healthcare professionals? We have so little understanding and have faced so much misunderstanding and misinformation I really don’t see the value of bundling them together in this way.. In fact it’s...