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Legitimate rant @Trish

Why are some NHS interventions omitted? This is the same wording as the Yellow Card system which also excludes anything other than medicines and medical devices. Surely if NHS money is being spent on delivering ANYTHING to patients then it should be subject to the same sort of safety...

I think part of our problem with ME is that some medical professionals think exactly this way about ME and effectively want to shut down the ME/CFS diagnosis. It’s a real challenge for everyone.

It makes me sad that we need to be this cautious about some researchers and institutions. Research shouldn’t be like a game of “got you”, where the aim is to manipulate patient data to fit their own dogma.

11,001 just now.

You are very clear headed through all of this.

This!!

PEM I’d love to be able to sometimes “push through” and not be concerned about the potential long-term after effects of doing stuff. Of course the other items in the list are distinctly unpleasant when they are playing up. However, I regard them as markers to make me slow-up and warn me that I...

Thank you. I will take a look

I was recently able to use a steamroom with a cold shower outside it. That was lovely and I found both the warmth and the cold (which I stood under for several minutes) very soothing. Very pleasant all round. But my husband who’s not used to cold showers couldn’t step under the cold at all...

Yes I had heard that too and it was one of the reasons I chose this supplement

This isn’t the thread I was looking for, but seems to be a good enough place to add my comment. My n=1 try-it-&-see test of a Turmeric, Curcumin, Ginger & Black Pepper supplement seems to be strongly reducing my PEM type symptoms, most especially muscle weakness and pain. Is it a cure? Nope...

It now seems to me that Cochrane (and Hilda now too) are totally unable to be transparent or honest about anything to do with ME. By “unable”, I mean that they are now so backed into a corner, that there is no plausible excuse they can make for what has happened and is continuing to happen...

From Hope 4 ME & Fibro NI “It is MOST reassuring and hopeful to have Northern Ireland Minister for Health, Robin Swann on board supporting the work of the charity- acknowledging Myalgic Encephalomyelitis is a disabling, chronic, multi-system illness, and recognising it is a global health...

Can you explain what you mean by “inflammation temperature” and how you measure it? I’m confused.

It’s the failure to address the blindingly obvious, that allows them to collect data that “supports” their favoured approaches.

Psychwashing however is much more catchy, and delivers the clear implication that everything is now being washed in their psych approach. Frankly it’s not just ME but the whole medical profession that is being psychwashed. :(

The reply is worrying. How can they still have faith in Sarah Tyson after what she said here? It makes no sense.

Almost like they are trying to instil some sort of fear into the patient group? Would those cautions cause patients to (even sub consciously) choose to avoid extra effort? Fear avoidance & effort preference anyone? If that advice, given to the patient group, IS accurate then it is surely...

Wow. I’d almost forgotten writing all that stuff. I stopped blogging when I was on the Guideline committee, and then got out of the way of it. Though very satisfying to be part of the committee that ditched GET.