Search results

Would Caroline's response to David Tovey's response to her complaint, warrant a thread of its own? It is gripping stuff and appropriately strongly worded.

Given it is one of his Sharpe's standard responses to accuse critics of not having read what they obviously have read, this would seem an appropriate response to him. Ideally one would wish to send him a list of things to read and insist he comments no further on anything to do with ME/CFS...

There is an interesting study here looking at how the social context of bad and misleading BPS research adversely effects the well being and health of people with ME. [added - Obvious research too, as others have pointed out, is needed to establish if CBT can be used to address the false...

Is defining symptoms as 'subjective' a subjective exercise? Who is being 'subjective' the reporting patient or the diagnosing doctor? If pain without a currently identified origin can be so severe as to result in vomiting or fainting, is it a subjective symptom? Are sleep disturbances that...

"FM as a stand alone diagnosis is however rare, as most patients with FM meet criteria for other chronic overlapping pain conditions or mental disorders" This raises so many questions, but one worries that like ME too many people use it as an excuse to take the condition less seriously or even...

I suppose if you believe King's previously 'cured' you, and are about to cure you again, you will accept at face value their explanations and rationales. It is a normal response to accept what these highly educated professionals are telling you, especially if it seems to accord with your...

It would also be interested to get an idea of what in real life people understand by GET, both the clinicians providing it and the patients experiencing it. Recently I was reading a thread on a UK Facebook support group, where several people commented on how GET helped them. It seemed that...

For me a good thing in this article was making the point that for some at least who 'recover', relapses do occur. However ME/CFS does seem to attract people that fall for the logical fallacy of 'going from the specific to the general'. Because something appears to work for one person does not...

We so desperately need good data on the long term course of ME.

And she totally missed that I pointed out a significant overlap in our qualifications and that I may have comparable hands on experience in evaluating behavioural interventions in biomedical conditions to her. But I have only myself to blame, as I failed to learn from previous experiences of...

She seemed very much in a willy waving frame of mind in that Facebook thread.

So depressing that the PACE appologists continue to refuse to attempt to answer these questions after so many years, but also that so many of the British medical establishment, the medical journals and the press protect their obfuscation.

In relation to the study refered to in the Blog post, it is interesting to ask what loneliness is. Loneliness is not simplely lack of human contact or lack of love. Different people in the same circumstances will experience very different levels of loneliness. One thing I did when I had such...

I wonder how much we learn to deal with lack of human contact. Currently I am coming out of the worst relapse of my twenty five years of ME. At the lowest, bedbound, I would regularly go ten days or more without any face to face contact with another person. Although the circumstances are very...

Historically there have been problems for adults with learning difficulties accessing general health care in the UK. I don't know if this has been quantified but people working with adults with learning difficulties also had the perception that their clients were given lower priority for such...

As with ME every thing is more complicated than might initially seem. We have no clear idea if the small numbers that appear to have total remission have recovered from the underlying condition or are merely symptom free. It is thought that children are more likely to 'recover' than adults, but...

One of the difficulties in dealing with the BPS advocates is pinning down what they actually believe about the nature of ME/CFS. Indeed some seem to shift what they say depending on their audience. CBT/GET were initially based on the ideas of an initial physical illness that though resolved...

I personally believe both the course of my ME and my life management were adversely impacted by not understanding adequately the possible and likely courses of my ME. It would be interesting to try to find a way of evaluating and quantifying these subjective impressions. As a forum I guess we...

There is enormous variation in medical interventions offered to people with ME: pain killers, sleeping tablets, vitamin injections, etc, etc, etc. You only have to look at the various patient forums to get a sense of the incredible variety. Also some are listed in such as the MEA purple book...

It asks for an 'ORCID code' too. I could not see any comments so I wondered if you need be 'signed in' some how to comment.