uab9876

[uab9876 @uab9876]

@jp_selvakumar @NerliTom @ErinCvejic Is this a case of having one intervention where you say your should believe you are better and you will get better then asking well how do you feel. Compared to one without that? (Like PACE was) if so results are quite predictable and study waste of money and unethical.

[uab9876 @uab9876]

@domsalisbury @SFlottorp @NerliTom @jp_selvakumar Normal from the people pushing such treatments. Apart from obvious flaws. No one should use SF36-PFS to measure different differences as starting point matters - it is not a linear scale so you can't do stats on it.

[uab9876 @uab9876]

@SFlottorp @NerliTom @jp_selvakumar On a very quick glance it seems to suffer the same methodological flaws from PACE etc. There is no excuse for this it - they are well known. Carrying out a flawed trial (with subjective primary outcome and unmasked) is known to be bad and there for unethical.

[uab9876 @uab9876]

@davidtuller1 @cochranecollab I remember Cochrane staff promising this would be done when they talked at a CMRC conference. They also had noting to say when told it is unethical to keep current review up.

Clearly the new Cochrane chair Susan Philips of Bond University wants patients harmed.

[uab9876 @uab9876]

@GwynneMP 2/2 The current plan is to rely on organic growth in ME research with no mechanism to encourage it. (i.e. not a credible plan). Over reliance of a few researchers with personal knowledge of ME and patients to drive things won't work. A proper investment strategy is required.

[uab9876 @uab9876]

@GwynneMP So why not actually do something. The delivery report is light on action especially on research. Government needs to take the initiative and kick start ME research - otherwise we will be in the same position in 10 years. 1/2

[uab9876 @uab9876]

@BendyGirl What about the role of research into chronic disease. How many with ME/Long Covid will they make worse trying to push back to work. Whilst spending no money on research into the fundamental science or treatments. Currently no treatment and activity makes symptoms worse.

[uab9876 @uab9876]

@david_colquhoun @Healthy_Control @Majikthyse @RobertHMcMullen @HealthWatch123 Listen to patients and the way they report being treated by doctors and not believed or told they will get better if they think positively and exercise. Many PwME report being made worse by medical advice. PACE was very poorly done hence NICE rated as low quality.

[uab9876 @uab9876]

@Healthy_Control @RobertHMcMullen @david_colquhoun @HealthSenseUK @susan_bewley @Majikthyse Its easier to go after a different industry (alternative health) rather than cleaning up the practices of academic health research.

[uab9876 @uab9876]

@RorPreston @domsalisbury @The_MRC They claim to get very few proposals (those they get seem to be turned down). They need to make an active effort to encourage ME research (and in doing so fix other issues such as reviewing)

[uab9876 @uab9876]

@wakeartisan @cochranecollab know there are issues and keep it up anyway. The only conclusion I can come to is that Cochrane as an organization and the individuals in charge want to harm people with ME and propagate bad science

[uab9876 @uab9876]

@RorPreston @wecrunchme @DHSCgovuk I've been involved in some of the working groups and would be happy to chat and see who would be good to contact etc. I can't PM you

[uab9876 @uab9876]

@domsalisbury Her approach looks very unscientific you can't conclude that doing x whilst recovery => x caused (or associated with) recovery. You need trials although I could see an approach trawling well documented medical records could work (i.e. sampling a huge set of population with ME).

[uab9876 @uab9876]

@tonywilsonIES Roughly 280,000 have ME in the UK and around 58% of those with long-covid meet ME criteria. Around 1.3m in total. Long term chronic illness with no treatments or cure - very high severity and impact on life. Very minimal amount spent on research over many years.

[uab9876 @uab9876]

@TomPlender @GoreLloyd @dokter_Arf @Fionas_Story It seems to me that you are aiming aggression at ME patients who don't agree with your perspective.

[uab9876 @uab9876]

@Fionas_Story @TomPlender My experience is that researchers interested in ME want to work with patients and want to do high quality research that addresses the problems. There are doctors (and others) who push unevidenced harmful crap - are you saying they should be allowed to do that without consequence?

[uab9876 @uab9876]

@TomPlender Do you know the difference between solid scientific evidence and anecdote? Your comment suggests not. Where people push others to try interventions without scientific evidence they should get push back. Its not bullying its preventing false hope and harm.

[uab9876 @uab9876]

@SnowyPanthera Does mind even exist - its just our interpretation of the effects of how neurons fire? Just like LLMs are basically finding statistical correlation between language tokens.

[uab9876 @uab9876]

@lifeanalytics We could try taking a LLama model and fine tuning with new material or create a vector db to go along side a model. (But I suspect resources to do fine tuning are expensive).

[uab9876 @uab9876]

@domsalisbury If money was spend on good quality research rather than supplements we may be in a better position.