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:hug:

The Guardian has published a series of detailed articles on their investigation into a pair of unqualified influencers who set themselves up as birth experts with tragic results. It is reminiscent of what we're talking about here...

From Thaweethai et al. 2025 (RECOVER):

There's a thread for it here.

I came across this during the week - Maclachlan et al. 2017 (incl. Jason & Newton) explain some of the problems they see with the ICC:

A case in point being when PACE types tell pwME/CFS that they believe their symptoms are real, knowing that that will reassure the patient that the clinician doesn't think they have what the patient thinks of as a psychological condition, when the clinician actually thinks that all they have is...

Actually I'm still confused. I might need @hibiscuswahine to recommend where I could read more.

Thank you for explaining! I'll leave my post there so that people can benefit from my mistake. I've always been clear on psychiatrist vs psychologist. The "psychological medicine" thing has always thrown me. I thought psychological referred to the mind, thoughts, behaviour, things like that...

I was really struck by a doctor's comment in a recent BBC article about PANDAS. First, here's what happened to the boy - he got strep, and these symptoms: Now, I think pretty much everyone would be able to recognise those as psychiatric symptoms. Here's what the doctor was quoted as saying...

I never got the sense that the major charities did this. They were always clear that they served the two labels, usually explaining them as alternative names for the same thing, sometimes explaining that some people saw them as different entities. They certainly didn't divide their advice into...

Phew! Glad your doctor was helpful. I had wondered about the LDN. I took one 1mg capsule of LDN once and was in bits. Felt awful that day and then really hungover for the following days. I slept so much for about a week. Hope you will feel better soon now that you've stopped, though I know...

Is the verdict in, @MinIreland? The suspense!

I am grateful that Hyde's ME criteria (Nightingale Research Foundation criteria) did not take off:

@MinIreland, this is by no means comprehensive, but will give you an idea. The quote below is one of two that Jonathan referred to as misinformation above. The fragility of the evidence linked to in the International Consensus Criteria is dealt with elsewhere on S4ME. Jonathan and Kitty have...

I think your sister's right.

In fairness, the prevailing theme here is the writer's dislike of (a) hypermobility, but particularly (b) pwME. There are different ways to solve these issues. If the hypermobility service was getting overwhelmed with referrals, the consultants who had wanted nothing to do with it in the first...

Yes, I'm not convinced that the unproven theories are the dealbreaker. Beliefs in daft things are not what comes across to me in stories of familes of children or of people with very severe ME/CFS, but I believe that Jonathan has heard other information from the coalface. Is it possible that...

That's helpful, thanks. I think it would be very helpful to feed this (and the other info you provided) back to groups like the 25% ME group, and make specific suggestions of how to communicate with clinicians in a way that is least likely to reduce credibility and lead to harm. For example...

Can you explain what is actually happening - are people with very severe ME/CFS giving clinicians really bad info that annoys the clinicians and leads the clinicians to think they are mad and not feed them? Is bad info from families to clinicians a key factor in whether clinicians initiate...

The patients with other diseases have no need to! Most can go onto any decent health website and find good quality information about the physiology of their illness. There will still be unanswered parts, but they are a lot easier to live with if you're being taken seriously, supported and...