The Future Challenges: Replenish-ME

https://www.weahsn.net/our-work/sup...hallenges/the-future-challenges-replenish-me/

https://twitter.com/user/status/1229805390176702465

 

Just been reading up on this am a bit confused; are they carrying out a trial of the product or just going ahead with the therapy without any evidence?

Also have they been a bit fast and loose with the name to make it seem tailored to pwME?
ie "Replenish-ME project" as opposed to the "Replenish-Me project"

I can't find anything specifically relating to ME on their research pages:


but there is a 'general' one so maybe they are using that as 'evidence' as ok to try out on ME patients?

https://kiactiv.com/research/

they are also 'piloting' it for COPD ( another classified under PPS)
https://twitter.com/user/status/1230066325474680832


I think that gathering data on objective measures is a good move, but if it is being done in conjunction with essentially a GET program based on Psychosocial methods I worry that the data may be misinterpreted and thus the wrong 'advice' given to the patients.

And that when the treatment period is over it might be another case of square pegs in round holes in terms of 'making the data fit' with their model of fear/avoidance/deconditioning.

 

I really don't see how this could be of any relevance. A habit of exercise is important and beneficial in type 2 diabetes and so you want to encourage that behavior. Applying the same approach to a disease that specifically does not benefit from an increase in exercise makes no sense. Most pwME do the most they already can and not knowing this is disqualifying. Any increase in activity in one place has to give in another and we are painfully aware of just how limited we are, it's not even relevant information (other than, I guess, the people who think we just feel tired, or whatever).

It's not clear exactly what is being monitored but as has been explained on twitter there is no heart monitor, pretty much the only relevant thing to monitor. It also adds enormous confusion considering the typical advice ME patients get from NHS personel.

I'm sorry folks but you are not helping when you don't even understand the basics of the problem.

 

just an other commercial advancement into ripping of taxpayers .

 

Oh look, one of the images is of shopping. It's the return of Bath's shopping therapy.

 

I'm confused. Is the PWME in the trolley? If so, why are they wearing a Manhattan diagram as a hat?

 

If anyone has a contact for Workwell it would be interesting to see their take on this?

@PhysiosforME , are you aware of the background to this ?

 

We've had some dialogue on twitter with this group - will try and find out bit more and come back

 

I couldn't manage one 20 minute telephone conversation. Are they mad? (rhetorical question)

 

This seems to he a very common mainstream misconception. That telephone conversations will be more manageable.

It seems to reinforce the feeling that this is really based on fatigue and miles away from ME

It is both sad and concerning that this yet again is the " official" worldview, and that there is such a huge gulf from reality.

 

Still no reply
https://twitter.com/user/status/1231657192887062528

 

Surely they 'should' already have all that information on hand, as it 'should' all have been needed for the funding proposal and ethical approval.

There should be no need for teams of people, from different institutions, to prepare it, as it should, indeed must, already exist.

 

A reply of sorts
https://twitter.com/user/status/1233025378916143109

 

"enrolment materials have not been widely shared to avoid confusion" is puzzling.

Are they a 'secret'?

Or do they think that pwME are collecting vast amounts of protocols, on fatigue studies, every day, and might possibly get confused and mix them up?

TBH the only possible 'justifiable' reason for them not being shared is that 'something' in them could bias the trial if known by the participants.

But withholding such information from participants would surely mean that the participants couldn't give informed consent?

But if they aren't trying to prevent participants from having access to the protocol then why withhold it from those not in their club?

 

Code:

https://twitter.com/KiActiv/status/1234482764763799557

https://twitter.com/user/status/1234482764763799557