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A term for what may be in one’s boxers. I’m not using the anatomical term because I don’t want someone searching this to find this unserious post. More seriously, I agree that it could be framed as neurological because of the symptoms and such. But I am in agreement with Prof JE that it’s...

I wouldn’t go for that last acronym if I were you ;)

I don’t think that we can claim that the PACE & Co failures prove that ME is a physical disease. Just that CBT & GET are the opposite of effective treatments here. However no need to prove that ME or LC are ‘physical’. There’s simply no justification for considering these otherwise. Whereas...

Yes :)

Yes, best of :emoji_four_leaf_clover: @Oni :hug:

I believe that this is the route @Valerie Eliot Smith proposed some years ago? I am in agreement that we need professional help. Though since this current pandemic has swelled and continues to add to our numbers we’d expect to face even greater frontlash than before since more of us now...

FND really is following in CFS footsteps isn’t it? Where the researchers and clinicians who came up with it spread stigma far and wide limiting seeds on the breeze. Then the FND researchers, well inventors or rather re-cyclers if we’re quite honest, publicly complain about this stigma, blamed...

I’m sorry I certainly didn’t mean to overwhelm or put you off of trying whatever equipment that might be accessible for you. The reason I gave so much information is just because I personally hit the various issues that I listed above. However I was always going to be a borderline case for...

Is it atypical?

I don’t know about that. Not in circulation. But @Trish has given a good example. I’d be happy with. My point of agreement is on the subject of no more questionnaires thanks.

To be fair, there was never a time when this type of professional didn’t promote themselves as competent well meaning actors in a sea of incompetence (see inexperienced) and corruption (see over medicalisation). It’s just that they’re now much more likely to appropriate patients own language as...

Don’t worry you’re getting it. That’s precisely what this is

OFFS

I love it.

Yes good point. Important context. This could have been really powerful. To have a fresh model and provide an example of good practice. Difficult to know if the establishment would simply shut down progress here too. But surely the best opportunity if there is one at all.

The story of the incremental adaptation and the foolhardy …..

Mind you, people including myself have expressed disappointment that MEA didn’t write to all the NHS trusts as part of an organised public campaign to bring them into line post 2021 NICE and expose the ‘specialist services’ reluctance/refusal to update their offer. So it maybe that this project...

I agree. 100% medicine’s fault.

You might be right. I hope that you are. But I am post judging rather than prejudging. I am afraid going by this last year’s performance that MEA don’t actually understand what’s needed or the extent of what’s harmful about the current (non) services. Additionally I am afraid that a...

Yes you’re absolutely right on the NHS every word. I hope you copy and paste this into a letter for them that you publish here too. I think there is a gap in the market for people who aren’t and don’t want to be on facebook, or instagram or anything else meta, maybe a sign posting to all the...