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A side issue that indicates a pressing need for recording harms from behavioural and psychological interventions, is the relatively recent BACME members survey that could be interpreted as indicating a widespread introduction or ‘pacing’ and ‘pacing up’ as therapeutic techniques by British...

I don’t currently have life insurance, but do suspect that in the past when I have had travel insurance and currently my ongoing motor insurance, have been cheaper than they might have been because of insurance companies misunderstanding of the nature of ME.

My first take home is that for the UK specialist services GET was already on the way out before the NICE guidelines were published, though we don’t know how much this was happening because it was observed not to work within clinical practice or because of the developing recognition of just how...

Wasn’t there some evidence several years ago that the contracted assessor companies were operating a target system to reduce claim levels, though this was denied both by the DWP and the companies involved?

I reformatted the abstract to make it easier for me to read, so am copying my version here in case it is helpful to anyone else: CHRONIC FATIGUE SYNDROME (CFS) AND FIBROMYALGIA ARE VASCULAR DISEASE FREQUENTLY TRIGGERED BY PERSISTENT INTRACELLULAR INFECTIONS. The tissue hypoperfusion and...

The authors state ‘It is generally accepted …‘ when in fact what they mean is ‘we and our narrow peer group believe…’. Yet again we see an inability to distinguish between correlation and causality, even if you accept their evidence base is in any way reliable.

From the discussion section: This attempt at objective analysis is bizarre given the authors remain oblivious to the design flaws in the research evidence they rely on (ie the use of subjective outcomes in unblinded trials), to the fact that they have no real evidence that what they regard as...

Concern about the lack of something, does not necessarily mean that provision of what is lacked will automatically benefit the person experiencing that absence negatively. Someone with a swallowing disorder, meaning they can not swallow solid food, may miss having solid food in their diet, but...

PRS? Sorry I struggle with acronyms, text speak or abbreviations.

Well I hope, that following the publication of guidelines rejecting GET and curative CBT and following a meeting with supporters of biomedical researcher, the sentences “We need to do more on ME/Chronic Fatigue Syndrome. There’s been a real lack of research over many years.” are intended as an...

I suspect most of them have only met mild and moderate patients, and then only on their good days. UK ME/CFS specialist services in general are unaware of the reality of their patients’ bad days, and totally unaware of the existence of severe ME.

Do sign and share? Petitions only get going if enough individuals and groups share them. Note UK parliamentary petitions can only be signed by people resident (both UK citizens and non citizens) in the UK or by UK citizens resident overseas. [corrected wrong word]

My default response to anything said by the current UK government is likely to contravene community standards, however it is very positive that the right noises are being made from the very top. This coming so soon after the publication of the new NICE guidelines will hopefully encourage the...

I wonder how true this is of other conditions. Does medicine see only what are regarded as the key symptoms and everything else is disregarded? What happens with say MS or MND (ALS): is it that once a diagnosis is made the range and variability of symptoms just disappear from a medical...

Multiplicity of symptoms is something that the medical profession seem to find difficult to cope with. Certainly with ME it is considered as a justification for regarding it as psychogenic, and if I remember correctly some regard individuals having a number of diverse symptoms as a feature of...

The author of this petition has post a link to a new podcast: See...

This phase alone, without brain scan evidence, is pseudoscientific advertising propaganda.

Well this clearly illustrates they are not talking about a descriptive category of medically unexplained symptoms, but a pseudo psychiatric diagnostic label of ‘Medically Unexplained Symptoms’. Unfortunately MUS is not even a syndrome with clearly described symptoms, rather it is an expression...

A percentage at least of specialist ME/CFS services have no medical input and consequently no capacity to make or to correct a diagnosis. Certainly the Sheffield Service I attended some years ago, insisted on a consultant diagnosis before they would accept a referral, and I could imagine that...

The author of this petition has posted an update