Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Interesting to see that the only university in NL that's put money in is the one that hosts the dreadful NKCV(Knowledge center chronic fatigue) that hosts Hans Knoop, Tanja Kuut etc.

Edit for clarification it's the AUMC that's put in 100-500 thousand GBP.

 

Presumably neither Cochrane or the IAG have published such a list, and at present I suspect it is probably better not to speculate at all about the group’s membership unless individuals put themselves forward officially as Hilda Bastian did in relation to her lead role. Do we know if she is still continuing in that role?

However, if any members are representing an organisation or voluntary group, I personally feel the organisation or organisations should be identified.

 

Crumbs…

 

Interesting on the issue of whether the IAG members who have links with named ME/CFS groups are representing organisations or themselves, they are described as “Nominees of three organisations representing people with ME/CFS”, the groups being

• European ME Alliance
• #MEAction
  
• ME/CFS Australia

though it was not unambiguously clear if the individuals were ‘nominated’ by Cochrane or by their ME/CFS groups. So we don’t know definitively if Cochrane chose the individuals or the patient groups, though perhaps the wording ‘nominees of’ inclines more to the latter. Do any members of these groups also members here have any views on this (that is if it is possible to respond to this, given the non-disclosure agreements)?

I suppose this currently seems more significant than it might have had the wider consultation on the new exercise review process begun in 2021 as promised.

There is also potential links to UK clinicians group BACKME, perhaps explaining why they seemed to be aware in September of the current IAG reactivation before Cochrane had responded to our communications. Interestingly there is some over lap with the latest NICE ME/CFS guidelines group.

[edited for clarity and to add the final sentence]

 

On that theme my mind starts running regarding the not wanting to withdraw the 2019 review vs Cochrane basically closing down in England due to funding and survival perhaps related to that moving to a Scandinavian university. and the clear push there in particular (seemingly Scandinavia in general) from certain individuals for lightning process psychosomatic and so on. Terrible timing I guess for them to have to remove the exercise review if future involves keeping certain types happy/not rocking that boat even if that is just the few shouting the loudest vs eg those who care about quality and standards they could make it feel that way etc

 

I seem to be hallucinating, when I was reading up about Dr Gladwell, I thought one of the Bristol NHS websites said he was on the NICE guidelines committee. However, looking again I haven’t found that again and he is not on the NICE list for the most recent guidelines committee members.

He did though draft BACKME’s position paper clarifying they no longer support GET in the light of the NICE guidelines (see https://www.csp.org.uk/frontline/article/physiotherapy-mecfs-towards-consensus ) and worked with Action for ME on their Pacing Guide ( see https://bacme.info/people/dr-peter-gladwell/ ).

 

Yes, that move is just within Norway. Cochrane Norway moving from one institution (where the lead author of the exercise review is) to another. Only the head of the Cochrane group, Clare Glenton, has moved too. The UK Cochrane Centre (was in Oxford) has closed, but Cochrane head office, where Karla and co. hang out is still going (in London 11-13 Cavendish Square W1G 0AN)

 

its BACME

no K

 

That explains why it always looks wrong when I write down.

 

As others ( @Hutan, @Peter Trewhitt )have said, If you are representing an organisation, would it not be necessary for you to have interchanges with that organisation? I would have expected the answer to be 'yes. It is very different from acting as a patient representative putting forward your own views as a patient.

@Trish stated

Repeating this, it seems to me that Cochrane set up a process that was unworkable. It asked organisations to select members to represent them, but also added a non disclosure agreement so presumably those members could not exchange information with the nominating body. This is senseless. How can Cochrane make progress on the review within such a senseless structure? Is this part of the problem?

It would be helpful to know if the 3 individuals appointed to represent patient organisations are actually constrained in this way, or if they have a way of exchanging information with the nominating organisation that does not fall foul of the non disclosure agreement. It would seem a very uncomfortable position for them to be in.