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London criteria (PEM is a symptom): https://www.meassociation.org.uk/2016/10/a-copy-of-the-london-criteria-as-revised-in-2014-archived-here-for-reference-purposes-15-october-2016/ Also, and with reservations, I thought some of what White has said in his paper was quite reasonable. Probably not...

This is probably off-topic, but as I happen to be here for a nice change, I thought I would ask: Would it be worthwhile doing a similar study to investigate if/why people who were previously at the correct BMI prior to having M.E. seem (and I dare say personal experiences are variable) to...

Morning I placed this note on our website and social media (or variants thereof) with respect to the latest The ME Show with Dr Sarah Myhill: We also heard from Dr Morten last Friday, and he's currently looking for a suitable Journal in which to publish the study, so hopefully we won't have...

I think that we sometimes forget - or it gets lost in all the other arguments - that people diagnosed with ME/CFS are largely I would suggest against GET and/or CBT because it has not worked for them. And this is despite (often) repeated and honest attempts to adhere to the regimen following the...

Next week sees Dr Sarah Myhill, and then we have the Countess of Mar, followed by Dr Nina Muirhead...

Morning, The article is based on a podcast interview. It would seem from the podcast that Duerden couldn't get a diagnosis on the NHS and turned to alternative medicine for help. I think he says that he couldn't meet the criteria for ME/CFS but the immunologist he saw on one visit also expected...

Morning-ish Not so far as I know, no. Bit of background noise occasionally on the recent podcast episode but I thought it was very good to listen to Caroline. We spend so much time now communicating via emails that it's nice to 'hear' a person's voice. P.S. That's not to say a transcript...

Good Afternoon, This is incorrect information. We actually had an email from Jane Colby (Tymes Trust) who had erroneously been informed we (the ME Association) had attached the earlier briefing to our blog and social media promotions where we're asking people to invite their MPs. Without...

Ms. Monaghan seemed to think it would be at 2.00pm on Thursday 24th, so just after lunch. Should be on parliamentary TV and might even be on the BBC (but that could be a long-shot). The revised/updated briefing will be available tomorrow with a cover letter for people to invite their MPs to the...

Hi Just wanted to add that the 2012 survey took us THREE YEARS to collate and then produce a report. And we had hoped the report would be one of two - the second part being about self-management. But in the end due to the very large drain on our limited resources, it was decided to just stick...

We have been advised this morning that there have been over 1,000 surveys completed which is pretty amazing as it was only launched last Friday. Thanks to everyone who has been able to take part. There's still time to register your experience of CBT and/or GET in the UK. Deadline: 31st January...

Graded or grading is another word/term that is often interpreted differently I think. My local ME/CFS clinic defined it as 'grading' the activities you would normally do or try to do in terms of how much it takes for you to do them. So, something that took a lot out of you would be a high score...

I personally think it would help if NICE updated or better defined what it meant by: GET (e.g. aerobic which is arguably what is hard to tolerate/causes harms with unmanageable increments in intensity), Graded Activity Management (e.g. non-aerobic and learning to manage as best you can), Pacing...

Morning, We're just waiting on the university to release the final survey and then it will be promoted across charity websites and social media. So, later today I hope. @Trish NICE were specific in that they wanted more recent feedback from people with ME/CFS/PVFS who had experience of CBT...

Hi John, I didn't come up with the answers, but as someone with M.E. I do take a range of medications to help with symptoms e.g. gabapentin, baclofen, co-codamol, mirtazipine etc. Not everyone does, granted, but some do. Might you not vote 'Other' and just drop me an email I can forward to Dr...

Morning, You should see promotion of the survey from Forward ME later today or tomorrow. All member charities will promote it on their websites and social media channels so hopefully it will be shared far and wide. It will be seeking feedback from people who have had CBT and/or GET as a...

Greetings, I canne work the multi-quote thingimebob, but in answer perhaps to those who were talking about the inadequacies of a GP making a good diagnosis. The NICE guideline is a framework for the NHS and in the ME/CFS guideline it says that 'primary care' i.e. frontline GPs should be...

Greetings, I canne work the multi-quote thingimebob, but in answer perhaps to those who were talking about the inadequacies of a GP making a good diagnosis. The NICE guideline is a framework for the NHS and in the ME/CFS guideline it says that 'primary care' i.e. frontline GPs should be...

I found the graphs that showed people had been steadily/dramatically increasing the number of GP consultations, tests, prescriptions and referrals in the up to 10 years prior to a diagnosis also very interesting in this context. I think Dr Morten was theorising if this perhaps indicated...