BACME Meeting 14-15 March

chrisb said:
It is interesting to note the lack of concern which BACME expresses for those patients who fail to improve, apparently only being interested in those who do.
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That actually seems to sum up much of the BSP-inclined 'research'. I suspect that if data could ever be fully released, there might have been much swept under the carpet about those who deteriorated, especially perhaps dismissing as due to other causes rather than accepting any possibility the interventions themselves might be an influence.
 
*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 evidence based treatments. BACME are a bps group and I just don’t see them wishing to promote heavily bio medical research. It would go against their interests.

Edit:

I found the name of the physiotherapist, it’s Jessica Bavinton, and she was involved in the PACE trial. The great resource ME-pedia give details about her http://me-pedia.org/wiki/Jessica_Bavinton
 
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anniekim said:
*Do you mean it's invitation only*

I presume they choose who to invite as speakers such as Per Fink.
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They might not, though. For most conferences, there's a call for papers and anyone can submit something. A committee peer-reviews the submissions and chooses which to accept. Also, certain people are chosen to speak in particular slots, such as the after-banquet speech, the keynote speech, the Fred Bloggs memorial speech, and so on.

There may be room for manoeuvre, in terms of anti-BPS speakers getting in. Especially if BACME are now feeling the winds of change and realising the extent of their ignorance.
 
Sasha said:
They might not, though. For most conferences, there's a call for papers and anyone can submit something. A committee peer-reviews the submissions and chooses which to accept. Also, certain people are chosen to speak in particular slots, such as the after-banquet speech, the keynote speech, the Fred Bloggs memorial speech, and so on.

There may be room for manoeuvre, in terms of anti-BPS speakers getting in. Especially if BACME are now feeling the winds of change and realising the extent of their ignorance.
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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.
 
anniekim said:
Will the committee reviewing the submissions be members of BACME
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Probably BACME members or people within their network whom they can call on to review a paper that's outside their collective area of expertise.
so they can cherry pick to an extent but would explain why the odd bio medical speaker gets through.
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They probably naturally only received submissions (if it's by submission) from within their network of people who think like themselves, and probably only think to invite from within that network. But if they're approached by outsiders, they wouldn't necessarily be hostile to the idea of getting a wider range of input.
 
Report improvement on a questionnaire and it will be believed :thumbup: report deterioration on the same questionnaire and BACME have treatment for those "irrational illness beliefs" :banghead:

ps my actometer is running in the 4.30 at Kempton :trophy@
 
Just read this, I find it hard to believe that the elderly would have a response to CPET testing like ME with serious deterioration on the second day. This testing is used for people with heart and lung diseases so older individuals must get them all the time. A single test is believed to give a reading that tells something about the patient's state of health. When they were devised surely they had to find out if it was reliable and replicable. if it doesn't it is useless so why would it be introduced?
 
Jonathan Edwards said:
Prof Crawley (paediatrician who is a fan of GET) shared the results of various randomised trials. This included such gems as the SMILE trial investigating the Lightening process. Most of the trials she discussed, SMILE, GETSET, FITNET, etc use subjective, patient report outcome measures. I asked her if there was a trend in future trials that will incorporate objective measures to ensure that the small, modest improvements seen in such trials are not due to the placebo effect. She really didn't like that at all. She did manage to tell me that using accelerometers is not that objective and her young patients cheat.... She is a fan of more passive recording of data via, for example, Smartphones. I kinda get what she is saying but I think the game is up re funding for such trials in the future – if there is nothing objective as a primary outcome measure I do hope it doesn’t get funded.
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Haha, not surprising. I'd cheat too if my home life was being threatened by my doctor.
 
Jonathan Edwards said:
Prof Fink is a lonely voice. I forgot to ask him about the validation studies that need to be done for BDD. I have emailed him about this. This work is vital if he is to get his new disorder into the International Classification of Disease (ICD-11), which is currently under review. [In ICD-10, which is used in the NHS, ME/CFS is classified under neurology.] A GP (Dr Nutt from the Sheffield CFS service asked him to clarify if her sees ME/CFS as a BDD and Prof Fink thinks it is – and then contradicted himself saying they are different too!!).
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Well, he did get BDD into ICD-11.

Edit: This should be taken seriously. If Fink is a lonely speaker he is a powerful influencer. Not to underestimate.
 
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Inara said:
Well, he did get BDD into ICD-11.

Edit: This should be taken seriously. If Fink is a lonely speaker he is a powerful influencer. Not to underestimate.
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This needs clarifying; Per Finks 'baby' is BDS, this is supposedly NOT the same as what has been put into the ICD-11.
https://www.s4me.info/threads/updat...nd-terminology-systems.3912/page-4#post-87393

"Fink has also clarified in paper [1] and presentation [2] that the BDD disorder construct/criteria for the ICD-11 core edition (for which an advance pre-release version was published on June 18) is not his BDS construct/criteria."

one to watch, as he (Per Fink) might continue to falsely make out that his is in the ICD-11
 
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