Thank you Maths teacher!I think your figure should be 85,600.
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Thank you Maths teacher!I think your figure should be 85,600.
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.
For me the most ridiculous concept is the fact that BPS researchers have now come up with three different treatments for ME.On another thread, I argued that we need to point out how ridiculous the LP is.
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.
Well spotted. Also, this talk by someone else in the same session: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
The psychological profile of POTS: Managing anxiety and illness behaviour
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 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......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.
Sadly this sums up the history of psychobabble, umm, sorry, psychosomatic medicine, ummm, double sorry (for them) the BPS crowd.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"
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.
.... 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......
"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."
"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.
16:30 The psychological profile of POTS: Managing anxiety and illness behaviour Morwenna Opie-Moran
That is currently underway. Younger for example.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.
I bet they even used the wrong kind of crayon!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.
Damn right. Always get a properly qualified charlatan.Honestly, this shows the dangers of untrained, unqualified practitioners being allowed to use these techniques.