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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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James Coyne to talk in Edinburgh Monday 16 Nov 2015 7pm

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Downloading a pdf on dial-up is time consuming. Would someone who has read it tell me where this is taking place so I can put it on the calendar?
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Guys, if you can contact My Coyne, please let him see this information if he is to critique PACE and the allied 'evidence based' psychiatric mantra of CFS/ME (which is based on CBT/GET).

If so, he may considering using the following information, to show GET is not safe for ME patients. NB: Also note in the following information, the victims are both males, yet 'CFS' is promoted as being a 'women's ailment, and in America, placed in 'Women's health'.


So I found out and wanted to share....

That Llewellyn King (Whitehouse Chronical) revealed in a recent online video (6th November, 2015) that a 15 yr old (Child) ME patient died from exercise in a video clip with ME advocate Mary Dimmock.

This is an obvious tragedy, however it is also a warning to other patients, and importantly, to reject the notion that GET is 'safe'.

Llewellyn King:
''There's one lady we both know who's son actually died because he tried to beat it by exercise...killed himself by exercise....He was 15 years old and he thought I will be a man, I will exercise, I will beat this with exercise. A truly terrible situation''.

Source:

MECFSALERT
Chronic Fatigue Syndrome A Disease Looking for Doctors and Researchers WHC 7044 Full Episode.
Video clip below.
Timecode of quote on video: 18.08 - 18.27


Also in the UK a member of Parliament (MP), an adult, also died in 1988 after exercising in the house of commons Gym when he also had ME.

Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded and unethical medical advice: that sufferers may exercise their way toward a cure for the illness.

Source: http://niceguidelines.blogspot.co.uk/2015/01/me-patient-mp-brynmor-john-killed-by.html


I thought this might be useful for any talk on ME CFS done by Mr Coyne, that shows that GET is just a theory, not an evidence based SAFE medical tool for people with ME.

I don't have a twitter account, so if someone can please let him know, and it may or may not interest him. I just though it was worth a mention if it helps saves lives, because we very rarely (if never) have anyone on our side to air their views in public about how serious a diagnosis of ME & CFS can be to the individual diagnosed with it.

Thanks.
 

A.B.

Senior Member
Messages
3,780
Hey #PACE investigators, Jimmy Coyne came to town. He's about to knock the stuffing out of your pathetic trial.

CT7_gN8WUAE-hjm.jpg


https://twitter.com/coyneoftherealm
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Thought this was worth highlighting in the flyer:

See his recent blog post at PLOS Mind the
Brain about the flawed PACE ME/CFS trial
that shows why results of follow-up study are
uninterpretable and investigators' claims the
benefits of psychological interventions
persisted are untrue. It received over 10,000
visits in in the first week after its posting and
the most comments ever of any PLOS blog.

:)