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I think under the old guidelines the more aware and able to advocate for themselves PWME would have chosen not to mention care plans at all anticipating that if GPs were doing things according to the guidelines GET/CBT would be included. And certainly I don’t remember coming away from the CFS...

Group video conferences cause PEM for me.

Oh ok now they’re coming out - couldn’t stand the charities getting the sensible message out. What planet is Miller on :banghead:

It’s not a great situation but seems like there’s a silver lining of reasonably good publicity People who might have had the initial coverage sent or mentioned to them now have some ok articles and tv coverage to respond with even if they weren’t confident to push back in their own words at the...

:D:thumbup:

I think people should set out their credentials properly when asking vulnerable people to contact them. Social media isn’t necessarily the wrong way to publicise something but a link to a page on a verifiable organisation’s website with details of how to contact is safer.

:banghead::hug:

I don’t think anyone has posted about this before. A change of approach by ME Assn. Some time ago (years??) I remember discussing information about ME available from different charities including ME Association one of the main criticisms of ME Assn was that nearly all their leaflets had to be...

https://www.nasa.gov/hrp/bed-rest-faqs/ I was wondering what exactly was meant by bed rest. I couldn’t find an explanation by a quick skim of the study. This is what I found by searching NASA bed rest study. 24 hours a day lying with head tilted down 6 degrees to mimic space. Everything...

Pathetic behaviour

They are following the old adage of not looking a gift horse in the mouth I suppose

German team having a go on the psychosocial relay/gravy train

Agree @Trish wherever GET is mentioned the risk of significant worsening of severity must also be mentioned. Shorter term worsening for most if not all but the long term worsening is a huge impact for people.

Seems like Bruce Arroll and the Goodfellow Unit have got some unhelpful beliefs that these trials are well conducted

Last paragraph it is not clear yet why they did worse on second 6minutes - yeah right :banghead:

Yes over tight management regimes with demanding performance targets and excessively strict approach to absence which doesn’t allow some discretion to be applied rather requiring managers to act like robots with no empathy is what needs addressing.

The interventions mentioned aren’t centred on the needs of the individuals, sausage machine generic workshops telling you you should be more resilient, or using a well being app to gee you up isn’t going to help people actually cope with difficult situations.

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review Currently on 9929

Best bit about this is the second half of the title, sadly as @Andy pointed out at the start of post 1 it’s not what we would have actually hoped for.

Moderation note hi all just a reminder that posts should address the topic of the thread which is about lessons the ME community can consider around publicity rather than a general discussion of scandals.