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Whether we call it MCAS or think its a part of MECFS that doesn't need to be attributed to another condition, this is a concern I have, because I know severe people with very bad allergic symtoms who rely on those meds. I personally wouldn't want my ivabradine taken away from me either. I don't...

Alas

It's actually quite enraging just how much better it is than anything we're actually offered.

I do wonder if MS and Parkinsons aren't better examples. Is there any chance this former minister of health might be able to bend the ear of the current ones?

The psychobehavioural school has always been deeply misogynist, all the way back to Freud and William James and the Victorians. It's a dark wonder that you get people like Suzanne O'Sullivan and Trudy Chalder who are so happy to perpetuate the harm it does to women everywhere.

I've lost count of the amount of people I've heard of who have suffered serious consequences including death because of doctors assuming a psychosocial cause for their symtoms. And yes, it's driving more and more people into the arms of alternative woo charlatans. It's quite overwhelming how...

Psychiatry seems in so many ways to just reinforce strict social codes and stigma - in this case keeping a stiff upper lip and never showing you are scared or in pain, no matter how bad things are.

An example of a condition with a clear physical pathology that is being needlessly psychologised. This problem goes so far beyond MECFS

Yep, I literally can't talk to non disabled friends about how bad things are because I'll sound crazy. Agreed - appeasing these people just means that they coopt our campaigns to increase their budget. We need a total change, a clean slate.

Thanks for digging this up- could you possibly explain these charts like I'm brain foggy? (Because i am!) I can understand the plot in the top right but thats about it.

That's really odd and frustrating

Im very interested in the differences they claim to have found between LC and ME/CFS, especially as the LC group seem to have differences in T cells that seemingly go in the opposite direction to what we have speculated about might be happening in MECFS. Also, what could a role for monocytes in...

Echoes of 'it was an easy PhD'

What I need: expert doctor to liase with GP surgery and specialists to explain I need home visits and accomodations if I need to have a scan or whatever done. Doctor to reguarly check if new or existing symptoms are caused by something we might have missed. Opportunity to take part in drug...

Yes I hate that stuff Yep if partner and I had had this information when we first got sick our lives would look completely different. People need to have the right information soon after onset or things can rapidly go wrong.

I think it would be good to get home visits from doctors and nurses who can look for any other conditions that might have been missed due to negligence on the part of GPs etc.

Is it worth writing that this treatment has a shaky evidence base and they should explore anti CD38 therapies, look into the DecodeME genes in pw LCME and fund their own GWAS + WGS? Or will it just be ignored? I don't trust recover not to completely f-k up the patient selection at this point...

Perhaps this is a cost/showing efficacy thing and they will do this at some point if they have reason to think NK cells effect on drug action is the link/cause of the separation

Yes I realised that shortly after posting! Temper may be a little short today. Thanks for advocating for us at the meeting, even though it didnt go as hoped.

I'm currently waiting for my partner to wake up and struggle through making dinner whilst I lie here unable to help her because we were both completely crippled by the bullshit these people spout. There are countless other people in this state because of them. So forgive me if I'm not in the...