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I know we've had this conversation before, but who is bdding for these contracts? Is it hospitals?

Yeah, but I'm not sure if it's the peppers or just the capsaicin. I do think the pickling is a part of it. I have never really looked into FODMAP in any depth, or followed a FODMAP diet. I suppose I could experiment on myself....

I have had IBS since my university days. Yes, it's a vague diagnosis, but until we know more it seems to fit my symptoms. Luckily it's mostly mild but I have to be careful with what I eat. Caffeine was a big trigger but I've been on decaf tea and coffee for a few years now. Unfortunately, some...

If it isn't our old friend Jake Hollis again, with more nonsense speculation!

Essentially, yes: his theory is that SNS activation and 'stress' leads to dysfunctional smooth muscle contractions that 'pump' lymph around the body in lymphatic vessels, which then leads to a build up of 'toxins'. The question then becomes: why wouldn't this cause a build up of fluid in...

This is exactly how I describe it. It takes me till lunch most days to 'come round', and it's usually evening before I feel at my best.

Yes, I get this, although it's not always a consistent pattern. I can wake after say 7 hours and feel more awake, and then after 9 or 10, which I need, I more frequently get the drugged/concussed feeling.

Dr Gupta is a mainstream NHS cardiologist who sees a lot of POTS patients, including privately. He has some good videos on OI and POTS as well as general cardiology. He does have an interest in ME/CFS given he sees lots of patients with the diagnosis. I hope doesn't start using his rather large...

He's a Renegade Research person now.

The host spends much of his time on X dismissing anything ME related, shitting on advocates and charities, and winding up ME/CFS patients. He genuinely believes LC has nothing to do with ME/CFS and that ME folks are 'grifters' who have 'hijacked' LC. Others here will know him as 'Dave the LC...

He was also invited to talk at one of the Stanford ME/CFS Working Group meetings:

This, from the main protocol page, is exactly what Paul Garner preaches — there's no difference. Garner could have written this. Just pointing that out (not commenting on the science of it all, and it's potential application in ME/CFS, as it's just another hypothesis at this stage).

Not to mention that Whitney has been slowly improving for years. The first improvement was attributed to Ativan and/or Abilify if I recall correctly.

This should come as a suprise to no one.

I would like to trial ivabradine. Propranolol seems to help me, especially with HR, but I still get the heavy-weight-in-chest feeling and blood pooling when my OI is flaring.

I assume #MEAction Scotland will be folded into the new charity?

I'm aware of Ciara Wright (https://positivenutrition.ie/about/) who posts on Twitter. She posts quite a bit about long covid.

Not sure if you are aware, but that was BACME's original name until around 2021. They changed it to match ME/CFS nomenclature whilst retaining the 'BACME' acronym. These NHS pages often need updating.

Just to be clear: I've seen no evidence that Ella was on the NICPM ward or under the care of the trust's ME/CFS service. She was likely far too ill for either. I'm not sure about any NICPM staff involvement in her care.

This post has been copied to a memorial thread. ------------- There's a post on FB from yesterday saying that Ella has sadly died: