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There was an appendix of this report has a report of a meeting for the CMRC where they discuss harassment being in terms of FoIs and parliamentary questions http://www.centreforwelfarereform.org/library/by-az/in-the-expectation-of-recovery.html Also @Graham has shared a document from his FoI...

We have a facebook page but I don't think we have planned a strategy yet. Also a twitter account https://twitter.com/s4me_info

I think this should be an exciting study because I believe that studies should be looking for changes over time in individual patients as this may provide more clues than lots of samples across a population. Its the kind of thing I think the metabolic studies should be doing. But it is a bit...

I noticed this on twitter (UK only) https://petition.parliament.uk/petitions/203140

Montoya, Davis et al published their paper on cytokine signatures for ME in July. Cytokine signature associated with disease severity in chronic fatigue syndrome patientsPNAS 2017 114 (34) E7150-E7158; published ahead of print July 31, 2017, doi:10.1073/pnas.1710519114...

Invest in ME have a money match campaign during November The first £500 raised by #MatchingMovember #fundraising for @Invest_in_ME #charity will be matched! https://www.justgiving.com/fundraising/nomenbar4me

I find this one concerning. It would be reasonable to believe that the only reason GET isn't harmful in trials is because those who would be harmed are not compliant. But they may appear so as they keep therapists happy or substitute activity. What evidence there is, I believe, suggests no great...

One gadget that a hairdresser suggested for my daughter was a "betty drain" which can be used for washing someones hair in bed and can be helpful even for a sink if bending is an issue. Its basically a plastic bit that goes round the head and has a long drainy bit that goes into a bowl (or the...

I think a number of the depression questionnaires are not reliable when given to people with chronic illness because too many questions are ambiguous. HADS has been commonly used but it is a really bad scale. I suspect this one is a bit better I have real issues with it (or any questionnaire)...

I thought the ICO ruled them illegal and even prosecuted someone for having employment blacklists

I think I need to ask. What is a thunderclap - I've seen the term used a few times and always wondered.

Merged thread Naviaux talks on autism and Suramin This talk seems to relate to the talk that Naviaux gave at the OMF event where he talked about Suramin being used to suppress signals to cells. He was suggesting a similar mechanism for ME.

I think we have the IoM report to thank for that it has legitimized that view and provided supporting evidence hence which makes it harder for those like White who disagree to challenge.

There are huge issues with childhood adversary studies that look retrospectively at adversity. It is easy for people to link incidents when told to look back and find reasons for being ill

I do think she should be challenged on who because she is labeling people so she needs to be specific. Maybe there is a group of anti-science people who are attacking her but we've not seen that. What we see is patients and academics criticizing her methodology and asking for more information...

I would be surprised if she hasn't given it is very easy to get emotional and act inappropriately when you feel your child isn't getting good care. The thing that will stop that is parents of children who have ME learn to be careful of the authorities and manage them. I think we should be...

I think she didn't realize people would actually look at her work in detail and ask questions. Maybe a few patients but not other academics. But then PACE was questioned and academics (in the US) spoke out. Now she is in a difficult position of having done bad work played loose with ethical...

I'm not sure that it is that simple for them. For example the paper she did where she appears not to have ethics approval (http://www.virology.ws/2017/08/28/trial-by-error-no-ethical-review-of-crawley-school-absence-study/) had two other Bristol university professors (Prof Emond and Prof Sterne)...

I've not had a chance to read the paper yet but will hopefully this week. It looks very interesting as does the seahorse testing thing.

There were some positive tweets from a few MPs