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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

Snowdrop

Rebel without a biscuit
Messages
2,933
The BPS brigade can bend PEM into almost anything and they already imply it is because of deconditioning. So I am not reassured that a blood bank that includes people with PEM but in the hands of Crawley and the like will help us at all.

I agree, the really must understand issue here with the BPS is that they will never believe that ME is what we know it is.
They have shown over and over that they will adjust their beliefs in accordance with what they are forced to acknowledge and appropriate facts to mean something more to their liking.

That is why we at first did not here about mind/body connection/dualism until the concept was needed because they were preparing for US research that would prove biology. It does not matter at all to them. CBT/GET now LP are the best treatments (for now) according to BPS until they can't even support that. By the time real treatment is available they hope that BPS will be very entrenched must have adjunct treatments because it's not just about the body the mind has it's part to play. They will still be pushing those while picking apart the real treatment research slowing the acceptance of real treatment for people who needed it ages ago. Their whole MO is based on putting off as long as possible the inevitable. I would not want to be part of that.

Any research in their hands no matter how scientifically pristine will be used this way so long as they can hold on to their power over most of the media starting with the SMC.

Edit for clarity
 
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Messages
2,087
On another thread, I argued that we need to point out how ridiculous the LP is.
For me the most ridiculous concept is the fact that BPS researchers have now come up with three different treatments for ME.
GET, CBT and LP.

Yet, scientists from universities across the US from Stanford to Cornell and worldwide from Norway to Australia have not even discovered what exactly this illness is yet.

None of these scientists are even remotely arrogant enough to suggest they think they know what ME is, yet the BPS brigade already have three different treatments chalked up.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Apologies if already posted:

Just had this info sent to me:

Parker is presenting on lightning for POTS at heart conference, at 13.55 on 2nd October. He says POTS is part of ME. Julia Newton is presenting in the same presentation session:

http://www.heartrhythmcongress.org/programme/02-10-2017/5

STARS POTS and Syncope : A multifaceted approach - Hall 8a - 13:30 - 17:15

13:55 The lightning process: what is it and can it be applied to patients with POTS? Phil Parker

15:45 Chronic Fatigue, Myalgic Encephalomyelitis (ME) and POTS: What is the difference? Julia Newton

16:30 The psychological profile of POTS: Managing anxiety and illness behaviour Morwenna Opie-Moran
 
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Messages
11
Hi, Phil/BS3,

I support your position there. The future for MEGA looks bleak, having been turned down by the two major funding options. I encouraged members to sign a protest against it but I did have mixed feelings when I heard it was turned down again. People had had the opportunity to point out all the flaws and at least one or two MEGA team members were clearly listening. More money for research is hard to say no to.

On the other hand the absurdity of the SMILE project (I will not call it a trial) reminds me of why I advised as I did.

Maybe we are all a bit wiser and in the end things will come right. It is good to have people playing things different ways because nobody ever knows quite which way is the most helpful and just a pantomime slanging match almost certainly isn't.

Hi Jonathan, many thanks for the reply! Agree with you. I'm feelign pretty flat following the SMILE result and press last week, and after the MEGA funding issues, it's been a few weeks of mixed news in our world. The NICE guidelines review is a glimmer of hope - so long as it goes the "right" way.....

I like the fact that not everyone agrees. We all need to be challenged, and only through robust conversations about difficult subjects, can we learn from each other. Especially with such a complex (and IMO many-subgrouped) illness as CFS/ME. Or ME/CFS. Or PVFS (my own particular brand - been well ten years now). Phil
 

SamanthaJ

Senior Member
Messages
219
Apologies if already posted:

Just had this info sent to me:

Parker is presenting on lightning for POTS at heart conference, at 13.55 on 2nd October. He says POTS is part of ME. Julia Newton is presenting on ME in the same presentation session, before Parker.

http://www.heartrhythmcongress.org/programme/02-10-2017/5

STARS POTS and Syncope : A multifaceted approach - Hall 8a - 13:30 - 17:15

13:55 The lightning process: what is it and can it be applied to patients with POTS? Phil Parker
Well spotted. Also, this talk by someone else in the same session:

The psychological profile of POTS: Managing anxiety and illness behaviour
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Especially with such a complex (and IMO many-subgrouped) illness as CFS/ME. Or ME/CFS. Or PVFS (my own particular brand - been well ten years now).

And not just subgroups of symptom types but of severity also. I know that even mild ME can be life challenging but it's important for those who are capable of going out in the world still and advocating to have a sense of how desperately ill some can be and what that means in terms of the urgency of change.
 
Messages
11
And not just subgroups of symptom types but of severity also. I know that even mild ME can be life challenging but it's important for those who are capable of going out in the world still and advocating to have a sense of how desperately ill some can be and what that means in terms of the urgency of change.
.... and not just different types & severity but ... different stages of the illness too! Something I am trying to remind interested parties of when I talk to them. EG. today. One of the researchers at CMRC just talked about "fatigue" . ie. "Reduced fatigue" ."More fatigue". I despaired. Many cases of PVFS (like mine), have acute onset (desperate); chronic phase (years of being crippled); recovery phase (many relapses; PEM everywhere), then plateauing out to recovery (lucky me - 6 years later). But this doesn't help those who want a "one size fits all" solution to ME/CFS. Not possible! Sorry! Very complex......
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I predict that positive results for the rituximab studies or a less stressful test for a low anaerobic threshold that is easily administered will not change their minds. They will simply peel off anyone with a positive tests and then insist that everyone else has CFS and continue with their "treatments"
Sadly this sums up the history of psychobabble, umm, sorry, psychosomatic medicine, ummm, double sorry (for them) the BPS crowd.
 

Large Donner

Senior Member
Messages
866
index.php


Other treatments? So there's..... LP? which is telling people to tell you they are well then saying they are well cos they said so, and PACE CBT/GET wherby you can get worse and be declared recovered and.....?
 

user9876

Senior Member
Messages
4,556
I have myself created channels beyond the colloquium context as part of my relationship with IiME - at their request. I fed back information to IiME because of those channels. I totally respect the position of IiME but there is no point in cutting off your own nose to spite your face. It is possible to be pragmatic without compromising principles. I learn a huge amount of useful information from Charles Shepherd despite not taking his particular stance. By working with Charles I have been able to help the Biobank team win important grants. It was attending the CMRC meeting in 2014 that gave me the ammunition to confront Peter White with his own abusive remarks in print. Should I not have gone (with the encouragement of IiME)? I don't think so, to be honest.

I am extremely cynical about the CMRC and MEGA and their ability to achieve anything. But I do think they are worth watching and trying to point in the right direction. I did think The CMRC had a number of interesting talks - although I've not fully listened.

The thing that occurs to me is that we are analyzing things like Smile and PACE and pointing out the obvious problems. If we keep a watch on them perhaps we can point out the obvious errors early.
 

Large Donner

Senior Member
Messages
866
I am extremely cynical about the CMRC and MEGA and their ability to achieve anything. But I do think they are worth watching and trying to point in the right direction. I did think The CMRC had a number of interesting talks - although I've not fully listened.

The thing that occurs to me is that we are analyzing things like Smile and PACE and pointing out the obvious problems. If we keep a watch on them perhaps we can point out the obvious errors early.


However the head of the CMRC is supporting his deputy despite the fact she calls kids muppets, changes their diagnosis to PRS, putting them at risk for social services intervention and backs evangelical faith healing "treatments" like LP, goes on BBC radio and says the ME association don't want children to have treatments and thinks that 30-40% recovered in PACE.
 
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user9876

Senior Member
Messages
4,556
.... and not just different types & severity but ... different stages of the illness too! Something I am trying to remind interested parties of when I talk to them. EG. today. One of the researchers at CMRC just talked about "fatigue" . ie. "Reduced fatigue" ."More fatigue". I despaired. Many cases of PVFS (like mine), have acute onset (desperate); chronic phase (years of being crippled); recovery phase (many relapses; PEM everywhere), then plateauing out to recovery (lucky me - 6 years later). But this doesn't help those who want a "one size fits all" solution to ME/CFS. Not possible! Sorry! Very complex......

I suspect one of the most important things will end up sampling the same people over time and looking how blood samples change with symptoms. That may prove easier than large scale studies if there is a lot of variation in the population.
 

JohnM

Senior Member
Messages
117
Location
West Yorkshire
Another article in the Guardian ..

Hospital bosses forced to chant 'we can do this' over A&E targets
Trust leaders say they were left feeling ‘bullied and humiliated’ by the incident at a meeting to improve performance
"Paul Watson, NHS England’s regional director for the Midlands and east of England, then encouraged those in the group he was leading to chant “we can do it” as part of a renewed effort to improve their A&E performance. Hunt and Stevens are not thought to have been at that session; nor was Jim Mackie, chief executive of health service regulator NHS Improvement, who jointly convened the meeting with Hunt and Stevens.

One chief executive said: “It was awful – the worst meeting I’ve been at in my entire career. Watson said: ‘Do you want the 40-slide version of our message or the four-word version?’ Everyone wanted the four-word version, obviously.

“He then said ‘I want you to all chant ‘we...can...do...this’. It was awful, patronising and unhelpful, and came straight after the whole group had just been shouted at over A&E target performance and told that we were all failing and putting patient safety at risk.”

According to the Health Service Journal, which revealed what had happened at the meeting, Watson told trust bosses that they were initially chanting too quietly and that they should chant the slogan again but louder, and “take the roof off” with the noise."

I can only hope that these same Trust leaders recall their experience - should they still be in post - and at some future point seek to implement/be asked to implement LP on children.

Wishing everyone improved health and every happiness. John :)
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
"Paul Watson, NHS England’s regional director for the Midlands and east of England, then encouraged those in the group he was leading to chant “we can do it” as part of a renewed effort to improve their A&E performance.

I'm not surprised the participants were dissatisfied, Mr Watson forgot to draw the circle and demonstrate the hand techniques. Honestly, this shows the dangers of untrained, unqualified practitioners being allowed to use these techniques.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
16:30 The psychological profile of POTS: Managing anxiety and illness behaviour Morwenna Opie-Moran

"Illness behavior"? That awfulness where you move more slowly, work less, and indicate you feel like crap? (Sickness behavior is a technical term... 'illness behavior' in the context of 'the psychological profile'... is pretty obvious.)

More and more, I get the impression that these therapies don't exist to cure or even treat patients, but to make us more presentable to the sensibilities of healthy people; that is, to compel us to present as healthy, regardless of our actual well-being.

[Edit: some tweets along those lines:


 
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