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If AfME expect patients to get behind the "holistic Healthcare Services" they're touting in Shaping Our Future Together, then the ME Trust legacy services will need thorough review. From that issue of InterAction magazine: "Action for M.E. has now completed its merger with The ME Trust...

I thought this was quite a helpful intervention, notwithstanding the overly rosy picture of CBT's efficacy. Increasingly the argument is being made about ME (and all chronic illness) that if patients say they feel better (whatever that means), then that is all that is important. Ratnayake is...

"These results most closely support the CCC, while there was less empirical evidence for the ME-ICC. While the IOM criteria was empirically supported, having the choice of cognitive impairment and/or orthostatic intolerance is a limitation, as our results suggest that cognitive impairment is a...

I think of it more as an exertional budget. “Activity” seems like a slightly grand term for what puts a dent in my exertional budget (e.g. drinking some water, or making this post). It’s a budget for me, rather than a quota, because I can move my allocation a little from one day to another...

What about male vs. female differences in response to placebo in an open label trial based on self-reporting of subjective data? Since such trials are anyway useless, it’s perhaps to be expected that there seems to be a relative lack of research into the influence of agreeableness (in the...

That discussion between Profs. Wessely and White about whether FSS is one syndrome or a collection of different syndromes reminds me of Stephen Roberts's observation that “I contend that we are both atheists. I just believe in one fewer god than you do. When you understand why you dismiss all...

I couldn't use the cafeteria at school as that would have meant unnecessary walking, and I needed my energy not to faint in lessons. I used to lie on a bench by the lockers in the corridor and my friend would give me half of the peanut butter sandwich her mum had made her (since my own mother...

By "substantiated by a programme of research", this review's authors mean that the 2007 guideline's GET/CBT recommendation was based on minimal research (not cited here), and that all the evidence cited here in support of NICE's 2007 recommendations (items 12-14) was published only years later...

I was told aged around 23 that my lung capacity was very small. The nurse at the GP surgery got quite ratty with me about it, and said I wasn't trying hard enough to breathe deeply (obviously not the case). I was surprised, since at that time I was mild/moderate and still quite active. I...

Twitter is blocking all click-throughs on mobile browsers when not logged in. Have been for a couple of days. You can still use Twitter not logged in from some browsers on a computer (not a mobile device) though.

And the evidence for this? Nil. The evidence of PACE is that ignoring chronic fatigue doesn't make it go away, and the main lesson of forty years of ME (mis)management is that the best thing for managing ME fatigue (and other symptoms) is to rest as required. Amazing - millions of years of...

Once the guidelines are out, if they are in line with the draft: To ask the Secretary of State for Health and Social Care, now that NICE has concluded that research previously funded by the Government into ME/CFS is of "low" or "very low" quality because of the use of subjective outcome...

@dave30th In the UK system, one of the roles of an MP is to raise their constituents’ problems with the appropriate minister in the House of Commons. At a Ministerial Questions session you will quite often hear questions - from MPs of all parties, including the ruling party - about how the...

What the authors should be asking themselves is just how bad the service from doctors must be that patients would prefer to get advice from the internet. If the plumbing trade had been overtaken by a cult promoting the idea that clogged lavatories - and only clogged lavatories - could be...

Severely affected patients want to participate in research, but for our enthusiasm, many of us pay a price in pain, debility and cognitive dysfunction. I was one of the many who had to abandon the Action For ME survey on the NICE draft because it was too long. Here are my comments: - Be open...

Involving those with chronic illness in ME research is essential, as DECODE ME are doing, but I can't help feeling that a "speciality that functions very differently" is what the BPS team built with their MUS/IAPT monstrosity. The exposure of the faults of PACE has surely shown us that science...

Does anyone know why this questionnaire requires the respondent's name? I couldn't find an explanation in the info sheet of why it was necessary.

I don't have any knowledge of IiME, but looking at the public documents, IiME is a charitable trust established in 2006, and IiMER is a Charitable Incorporated Organisation (CIO) with identical charitable objectives established in 2013, the year that CIOs were introduced. This is a fairly...

On the rare occasions when I post here, it tends to be "flyposting": I have to go off to recover for a few weeks after having posted, and don't find out what happened next in the conversation. It was great to come back on today to find that the brilliant Caroline blogged about...

The Independent Medicines and Medical Devices Safety Review into three unsafe medicines/medical products aimed at women has now published its report to the UK government (8 July 2020). The report, First Do No Harm, calls for: a new Patient Safety Commissioner to "champion the patient voice"...