Search results

Still confused by a lot of this. In the BMC paper I linked to above, it is written: Am I right they are dismissing the idea of disease even in the brain (as I take it the brain would be described as the only non peripheral organ?), though they only refer to disease or injury in the peripheral...

A fatigue clinic in Holland using CCS model based on Jo Nijs’work. Google translation below from their page: Physiotherapy in patients with chronic fatigue syndrome ME / CFS and fibromyalgia are unexplained, no cause is known. Patients have especially severe fatigue and many other complaints...

This pic sums up the steps in development of CSS well!

Briefly, the paper below gave me the clearest explanation yet how CSS dismisses the idea of actual disease or injury but from the paper the ‘idea of direct psychological causality to symptoms is regarded too simplistic to account for most MUS’. It’s so sneaky. BPS model upgraded from fear...

Thank you everyone. I am in crash after reading up on all this (am bedridden) so can’t type much, but all the replies really helpful. This CSS model feels a big threat especially as it tries to hide its psychosocial grounding by putting in a few biological terms.

I know central sensitisation theory is the new buzzword by many of the bps brigade, Per Fink refers to it a lot in his slides, and has no evidence. May I ask as well as I think them suggesting central sensitisation is the cause of pain in pwme, are they also trying to claim it’s the cause of...

Thank you @Dx Revision Watch for your clear explanation, all clear now. Also thank you for your, hopefully, successful proposal to put CFS under nervous system disorder parent after it had been left without one when the Multi System Disorder parent was retired. I am also pleased to hear that...

@Dx Revision Watch, sorry I am bit confused on the above. Are you saying SNOMED has accepted including the term CFS under the parent title Disorder of nervous system, not that CFS will be a stand alone Parent? Many thanks.

Sorry I haven’t read through the thread, so sorry if this has already been addressed, but I contacted Forward ME, as it confused me, who kindly confirmed this a typo and the word ‘mental’ should be ‘physcial’

Thanks @Barry. Yes, as the three arms were unblinded the effect is neutral. By Stone not mentioning only two of the three unblinded arms were given positive feedback about the treatment introducing bias to these over above the APT and SMC arms Stone is misleading the reader. He is bringing in a...

Of course agree with you 100%, but I think Stone was trying to be canny here and say if unblinded was to have an effect then it should on the APT arm too as also unblinded. Sounds reasonable but many readers won’t know he purposely neglects to mention is those in the APT arm may have been...

Also Jon Stone above conveniently doesn’t mention, as detailed in the reanalysis paper, that only the CBT and GET manuals stressed how effective these two treatments supposedly were ramping up the bias for CBT and GET over APT.

Thank you @Nasim Marie Jafry for articulating so well why some of us were so concerned that you Jen reached out to Sharpe. I do appreciate Jen all you do and the great achievements of Unrest, but I agree with Nasim that tweeting Sharpe was an error of judgment.

According to Afme website, the CEO, Sonia C, was appointed in September 2012 so was in place when both Crawley and White got funds from them. Also yes some of the trustees may have been in place when they got involved with PACE, 2007 NICE guidelines and so on.

@lisette, you raise excellent points showing the many things Afme have done wrong, but briefly I don’t believe they are currently funding any research by Crawley and Peter White. They did help fund research by Crawley in the recent past. I don’t know about Peter White. Also Crawley is not their...

Thanks @Sasha for explaining how conferences work. Will the committee reviewing the submissions be members of BACME so they can cherry pick to an extent but would explain why the odd bio medical speaker gets through.

*Do you mean it's invitation only* I presume they choose who to invite as speakers such as Per Fink. One of the members is a physiotherapist who was either on the Fine trial or Pace, apologies can’t remember which. She has a private practise touting CBT and GET for pwme citing they are...

They choose the non-BACME members to present and it won’t be by and large the biomedical researchers. I don’t know what will happen if they merge with CMRC, it could go very wrong. As Trish said earlier BACME seems to be med professionals who work in the heavily focused bps CFS clinics or who do...

I cant write much today as symptoms flaring but my own experience and countless others I know were banned from Afme Facebook not under the criteria you listed. The common theme for banning amongst people I know is making a polite criticism of actions by your charity. You appointed a...

I really hope so and think it’s possible we are, but after so many years of seeing ME minimised and wrongly framed as a behavioural condition I will believe change has truly come about when I see more evidence that it has. I am very grateful for you and the many others that have helped to expose...