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Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

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anni66

mum to ME daughter
Messages
563
Location
scotland
anni66 said:
School attendance feeds into other narratives pursued by EC. Parents have horrendous experiences re attendance being used as a marker for social services intervention. There is no underlyi g belief that children have ME and this tends to underpin the whole approach
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Sadly our paediatrician phoned at lunchtime. She has been copied in to tests and referrals our GP has agreed to as my daughter is now 16. Lupus, Lyme and referrals to immunologist (ebv trigger and reactivation) and endocrinologist ( hpa axis and thyroid technically within range but creeping towards hypo with lots if hypo symptoms).

She wishes to refer us to Esther Crawley which i have refused. I did suggest julia newton as i could not think of anyone else on the spot. Any suggestions would be welcomed.

As my daughter is too ill for school and CAMHS ( and this is not well understood), i fear us being framed as " persistent refusal syndrome" candidates.

I have contacted tymes trust meantime.
 
Cinders66

Cinders66

Senior Member
Messages
494
Who will SMC pull up as experts this time? They won't call on biomedical model people who would question it, likely other NICE style pediatricians and maybe neuropsychiatrist who woukd support the idea of potential to rewire the brain or quote how beliefs and focussing on symptoms has long been thought implicated?
 
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user9876

Senior Member
Messages
4,556
anni66 said:
Sadly our paediatrician phoned at lunchtime. She has been copied in to tests and referrals our GP has agreed to as my daughter is now 16. Lupus, Lyme and referrals to immunologist (ebv trigger and reactivation) and endocrinologist ( hpa axis and thyroid technically within range but creeping towards hypo with lots if hypo symptoms).

She wishes to refer us to Esther Crawley which i have refused. I did suggest julia newton as i could not think of anyone else on the spot. Any suggestions would be welcomed.

As my daughter is too ill for school and CAMHS ( and this is not well understood), i fear us being framed as " persistent refusal syndrome" candidates.

I have contacted tymes trust meantime.
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Tymes trust are great. We experienced Crawley's service in truth they do very little (but that was a few years ago) but it did help keep the authorities off our backs. That was until Crawley decided my child should have recovered and claimed she had cured the CFS and now she had PRS through the stress of being ill. The local paediatricians were crap and we had trouble with one CAMHS consultant but a different one was ok(ish). The second CAMHS consultant said they didn't do PRS diagnosis as it was 'too new'.
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Speaking of Tymes Trust and in the context of the mind over matter approach....this petition has been recreated by Ed Lewisohn in order to aim for 100k signatures as his first one had to close at nearly 11k signatures because of the general election: https://petition.parliament.uk/petitions/200066
Under 'more details' it says...
The NHS provides psychiatric therapies for what it refers to as "CFS/ME". These therapies are often ineffective and sometimes make patients worse. They are the result of a Myalgic Encephalomyelitis policy heavily influenced by psychiatrists who are skeptical about the existence of Myalgic Encephalomyelitis. It is time for a policy re-think about the effectiveness (and cost-effectiveness) of current treatment.
See: http://www.tymestrust.org (for the effect of current policy on children with ME).
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ETA: although in context I know neither Esther Crawley nor Phil Parker are psychiatrists themselves and that some neurologists are supporting the promotion of ME as a functional (psychogenic) neurological disorder.
 
Cheshire

Cheshire

Senior Member
Messages
1,129
user9876 said:
Tymes trust are great. We experienced Crawley's service in truth they do very little (but that was a few years ago) but it did help keep the authorities off our backs. That was until Crawley decided my child should have recovered and claimed she had cured the CFS and now she had PRS through the stress of being ill. The local paediatricians were crap and we had trouble with one CAMHS consultant but a different one was ok(ish). The second CAMHS consultant said they didn't do PRS diagnosis as it was 'too new'.
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Did your daughter's symptom change between the two diagnosis? If not, I wonder on what basis Crawley justifies this change, apart from the length of illness, which really is a silly criteria. I remember reading her paper which was just a pile of craps.
 
U

user9876

Senior Member
Messages
4,556
Cheshire said:
Did your daughter's symptom change between the two diagnosis? If not, I wonder on what basis Crawley justifies this change, apart from the length of illness, which really is a silly criteria. I remember reading her paper which was just a pile of craps.
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They got worse but no real change. Although Crawely tried to pick changes or things she thought were an issue we said no thats wrong to her on that but she had decided on reviewing the notes prior to the visit (she did say that or something along those lines)!.
 
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NelliePledge

Senior Member
Messages
807
Jo Best said:
I suspect that Esther Crawley would have known from the feasibility study that LP doesn't work so the fact that she ploughed on with the full trial and now will hold a press conference suggests it was a 'success'.
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her favourite ME group that she's medical adviser to in Sussex (the one with Colin Barton) actually invite Lightning Process practitioners to their conferences and included them in their useful links page on their website
 
Cinders66

Cinders66

Senior Member
Messages
494
user9876 said:
Tymes trust are great. We experienced Crawley's service in truth they do very little (but that was a few years ago) but it did help keep the authorities off our backs. That was until Crawley decided my child should have recovered and claimed she had cured the CFS and now she had PRS through the stress of being ill. The local paediatricians were crap and we had trouble with one CAMHS consultant but a different one was ok(ish). The second CAMHS consultant said they didn't do PRS diagnosis as it was 'too new'.
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That's awful. I'm glad your child has knowledgeable parents to protect her. Best wishes.
 
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NelliePledge

Senior Member
Messages
807
MEA have posted on facebook
ME Association
5 hrs ·
The Science Media Centre will be hosting a press briefing on the imminent publication of the SMILE Trial (Lightning Process in adolescents with CFS) on Wednesday. Prof. James Coyne has been made aware of this development and has chosen to break whatever embargo was in place.
The ME Association is preparing a response to these developments and as soon as we have more details of the actual trial results, we will let you know. But be aware that the media are likely to report later in the week - we will try to get our responses featured where possible.

#MECFS #LightningProcess


Embargo broken: Bristol University Professor to discuss trial of quack – Coyne of the Realm
Embargo broken: Bristol University Professor to discuss trial of quack chronic fatigue syndrome treatment. by James C Coyne September 17, 2017…
MINDTHEBRAIN.BLOG
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
Cinders66 said:
Who will SMC pull up as experts this time? They won't call on biomedical model people who would question it, likely other NICE style pediatricians and maybe neuropsychiatrist who woukd support the idea of potential to rewire the brain or quote how beliefs and focussing on symptoms has long been thought implicated?
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I'm not sure if he still works with ME patients but Prof Findlay was promoting the Lightning Process years back? Maybe there is someone like him still lurking out there.

They could also be preparing some "tame" patients instead to say that the LP works in interviews with Journalists. Lining up patients to use against patients sounds like a strategy they would stoop too.
 
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