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Thank you @Trish a very useful thread. I will follow up on the links when able to. I am particularly interested in working out what of our cognitive problems relate to generalised reversible neurological issues such as brain inflammation or reduced oxygen supply and what if any relate to focal...

Just had the thought that, though sleep disturbances are a regular feature of ME, I don't think I recall anyone mentioning any issues arround dreams or dreaming. Personally I rarely remember any dreams and those that I do are not about recent events or my current life, and that has not...

There is a risk to the entire MUS edifice if GET/CBT and PACE get dumped for ME, as this is about the only evidence they have. Also if this fatally flawed methodology is lost to them, they have no where research wise to go next. If it is recognised they are barking up the wrong tree with ME...

For me in the early years post onset, I was still working so I had no choice but to leave the house at 8am and keep going through the day, also I had 'hypersomnia' rather than 'hyposonia' so was sleeping every free moment, so if you are sleeping twelve or more hours a day, using every free...

I second this. Not a good afternoon for me, did too much this morning, so grateful to be able to dip in and out of this thread. Thank you to all who posted.

I agree with this. It is important that people explore the 'sleep hygiene' ideas to see if they can find things that help them, but there are no right or wrong answers for people with ME, only what seems to help and what does not seem to help that individidual at that point in time. The 'sleep...

Protecting the status quo.

Difficult to answer the question as at present my sleep is quite good, but like others the slightest thing destabilises it and at times I can get total sleep inversion. I have answered 'yes' to the question as my ME 'can cause sleep inversion and does so at times', though it 'is not doing so at...

Not with it to read everything properly, but a first thought is that this weakening of evidence considered as relevant is potentially both bad and good. Shifting away from insisting on rigorous experimental design may be a way of keeping bad research such as PACE in the mix, but it also may...

Try not to worry much about this. Not only do most of us respect your ability to make good choices, but it is important you work on the things that matter to you, the projects you enjoy, as that means you are more motivated and therefor more likely to be successfull. It is impossible to change...

MPs don't have to attend a debate to vote, but they do have to be present in person at the vote. I think the motion is carried or not the basis of a simple majority of those voting, regardless of how many (or how few) are present. [added - sorry I missed @Barry 's post above indicating that...

My first thought is that any one sided weakness should be refered immediately to a doctor as one of the potential causes is a stroke which is most effectively treated medically in the first couple of hours after onset. Having said that I did not follow my own advice when two years ago I...

The political masters have been informed over and over again of the real life the consequences of their policies. In relation to the DWP the government seems to believe that people can be bullied into work or can be ignored into health. They may believe lack of work and ill health are lifestyle...

My feeling is that the problems in the UK are not with the structures in Whithall but the politically generated culture that has developed in a number of departments over a number of years. It has been centrally decided that anyone claiming any form of benefit should be treated with hostility...

Is a journal likely to be legally liable for any harms that result from actions based on research they have published once its flaws have been pointed out to them?

Frustrating that this article is behind a paywall, as I believe what they are attempting to do is very important. Reading the abstract raises various thoughts which may or may not be relevant to this survey. Sample size However 150 participants is potentially very small unless we can be...

Thank you @Trish for writing and sharing this clear and important letter.

My personal experience of CBT was of the 'right' form, and on the last day of the intervention I would have reported it as being helpful, but shortly after completing the treatment I experienced a significant relapse in my ME, going from moderate to severe. So I felt I could have reported it...

I suppose this will depend on how the data from the survey is analysed/reported. If the 'right' form of CBT is helpful in ME then a percentage of respondents, if offered this, might report a positive effect. When contrasting this with negative effects from the 'wrong' form of CBT, if figures...

Although I have sympathy for the idea that there is a 'right' and a 'wrong' form of CBT for people with ME (the 'right' being CBT to help people who need it to adapt to their long term disabling medical condition and the 'wrong' being PACE type CBT design to cure the underlying condition), there...