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I’m not on top of these issues as well as some of you are so I’m not the best person to comment on the latest episode with Dr Myhill. However I’m aware of the controversy! I (and I’m sure many other members) very much value your posts on this forum @Lucibee and your contribution to the...

According to the article you posted earlier, sensitivity to drugs/medications might involve a similar mechanism to food intolerance: https://www.slhd.nsw.gov.au/rpa/allergy/research/RoleOfFoodIntoleranceInCFS.pdf

The link appears to be working now. From the Cognacity website: Fortunately ME/CFS is not on the list of conditions they treat although I suppose they would probably lump us in to this category: Psychological problems related to chronic pain, cancer, head injury, etc.

One of Sue Pemberton’s papers was discussed in this thread on PR: https://forums.phoenixrising.me/threads/experiences-of-daily-activity-in-cfs-me-and-their-implications-for-rehabilitation-programmes.27323/ I could copy and paste some of the more useful comments over here but I’m not sure...

Yes I agree Trish. But however carefully they are applied, graded activity and cbt still have no reliable evidence base as treatments for ME/CFS. So is it right to be endorsing their use in any form? The risk is that we send the wrong message and end up with new NICE guidelines that are no...

The private clinic that Sue Pemberton works at is called the Yorkshire Fatigue Clinic. The clinic uses GET and CBT as treatments for ME/CFS. From their Commissioner Information Sheet linked on their website under the heading “What treatment is available at the Yorkshire Fatigue Clinic?” Their...

Thank you @Gary Burgess for your excellent podcasts! I’ve been enjoying catching up on all episodes of The ME Show from both series 1 and 2. As others have said, you have a fantastic interview style and you’ve had lots of fascinating guests on the show. I suspect that your latest podcast...

Caroline’s response to this included the following quotes made by Jonathan Edwards earlier in this thread (with reference to S4ME): :thumbup:

In case you hadn’t noticed, Hilda Bastian is the creator of the above cartoon and the cartoons in her blog. It seems she is quite a talent! You might like to check out her website Statistically Funny (“commenting on the science of unbiased health research with cartoons”)...

Thank you @Jonathan Edwards! It would be absolutely wonderful if you were to do this :thumbup:

Is anyone else experiencing difficulties with registering with PLOS or posting comments on the website? I’d really like to post a comment on Hilda’s blog but I keep getting server error messages! Very frustrating!

I’ve made a start on reading this. The introduction of the report concludes with this line: !!!! :nailbiting::jawdrop::cry:

Thank you @Simbindi for these really helpful links about the Green Paper. I did a quick search and was surprised to see this Green Paper on Welfare Reform does not appear to have been discussed anywhere on the forum yet (but perhaps I missed something?) This topic of welfare reform is a huge...

I’ve done a bit more research on this, here is what I’ve learnt so far... In England, patient’s rights are set out in the NHS Constitution for England. These rights only apply to their treatment under NHS care so I don’t believe they are applicable to the welfare system. (I.E. they don’t...

On second thoughts perhaps the laws which give patients the right to refuse treatments should protect them from having their benefits cut if they refuse treatments. In which case the DWP would be breaking the law if it was cutting benefits for this reason. I guess it would really depend on how...

I think you are correct, there do not appear to be any UK laws that protect patients from having their benefits removed if they refuse treatments. However, according to an article in The Telegraph (see link below) in 2014 there were rules to protect patients: I have yet to establish whether...

Thankfully not! From the GMC document on patient consent as linked to above by @Simbindi (p27): https://www.ntw.nhs.uk/content/uploads/2015/12/NTWC05-App1-ConsPts-DrsMakingDecisions-V04.5-Iss-1-Jan-19.pdf The laws and procedures for assessing whether a patient is capable of making their own...

Your intuition is correct. “Work coaches” do play an important role in beginning the sanctioning process. From the UK parliament website: https://publications.parliament.uk/pa/cm201719/cmselect/cmworpen/955/95509.htm

I agree. The terms "baseline" and "boom and bust" are inappropriate and need to be abandoned in my opinion. Unfortunately the use of these terms is rather widespread! Perhaps we should be campaigning against their use and suggesting better ways to describe pacing and our lived experience of...

I fully support this letter too. Well done Trish, fantastic stuff :thumbup: This needs to happen. We need to push for this.