get

Open Access Article here

Starts around 2.11.00 John Darvall. Interview with ME sufferer (ME for 20 years) Liz, who participated in pre PACE Frenchay trial in 2002. Mentions PACE trial and GET being discredited, #MillionsMissing campaign. Also talks to her husband re NICE guidelines and debate in HofC. good stuff...

Download link, https://25megroup.org/download/2302/?v=2840

NHS Health Research Authority: <https://www.parliament.uk/documents/commons-committees/science-technology/Correspondence/190129-Sir-Jonathan-Montgomery-Health-Research-Authority-to-Chair-re-PACE-trial.pdf> --- CBT = Cognitive Behavioural Therapy GET = Graded Exercise Therapy Let's take Peter...

How many protocols does this harmful GET trial need exactly? There's 5 on the website now. Is Action for ME supporting this street merging with AYME? They have a clear statement against GET now. Selected GPs are now sending out letters on behalf Crawley et al for any kids aged 11+. For 16 or...

Some revelations about shenanigans at NICE - the IAPT team is in charge of the NICE guidelines for ME/CFS - as flagged up by Hope 4 Fibro & ME Northern Ireland - back in 2017!!! According to the IAPT webpage it's still listing the "CFS/ME" guideline as under their control - that's the...

#MEAction article with Forward ME Group statement here Take the Survey The survey closes on 31st January 2019. We are counting on the ME community to spread this across all of their networks, both online and in-person. Tag me if any technical problems with survey and I'll make sure they...

https://www.verywellhealth.com/exercise-for-fibromyalgia-chronic-fatigue-syndrome-716045

So there's some news from Belgium. The government has extended its ME/CFS-convention until 2020. In parliament our Minister of Health said the assessment report of GET/CBT rehabilitation has shown to be highly successful. Patients however were not allowed to see the report... The new...

This thread is intended for collecting evidence of harms from GET and other therapies that involve increasing activity and/or exercise. Particularly useful would be any research demonstrating either that GET has directly caused harm, or that research on GET that claims no harm has not properly...

Of all the confusing places to find this information, I found it on another exercise -is-medicine industry, CrossFit. (though they want to add diet to exercise, but still are excluding/ignoring actual medications, the need for continuing medical research, and public health efforts like housing...

Free full text: http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx

Caroline Struthers' letter to Cochrane Governing Board I noticed on Anil about ME's Facebook page the following link: https://healthycontrolblog.wordpress.com/2018/11/29/my-complaint-to-the-cochrane-governing-board-about-the-cochrane-review-of-exercise-for-chronic-fatigue-syndrome/ Caroline...

Another 'who said' post! I've got Vink's paper (2016). Even the PACE authors themselves say there was no difference between groups in lost employment, before or after the trial, and yet CBT and GET were more expensive anyway, and that may be enough. In general benefits is a terrible, terrible...

The issue of GET and safety has of course been much discussed, especially regarding the the PACE trial authors' claims to have demonstrated its safety, versus the fact there exists good quality anecdotal evidence to the contrary. There is however an aspect I'm not sure has been broached, and...

https://in.reuters.com/article/us-health-chronicfatigue-dispute/exclusive-science-journal-to-withdraw-chronic-fatigue-review-amid-patient-activist-complaints-idINKCN1MR2PI Reuters: Exclusive: Science journal to withdraw chronic fatigue review amid patient activist complaints Kate Kelland...

http://voicesfromtheshadowsfilm.co.uk/2018/dialogues-for-a-neglected-illness-a-new-mecfs-project-awarded-wellcome-funding/

A blog about personal experience of PACE recommended 'treatments' published earlier this year. https://mookpixie-chronicills.blogspot.com/2018/03/the-pace-trial-complaint.html

http://journals.sagepub.com/doi/full/10.1177/2055102918805187

In Dagens Medicine by Benedikte Monrad-Krohn Article Google translate