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Dr John Grensmith responds to ME Recovery System
Tuesday 15 June 2010
From Dr John Greensmith via the OzME newsgroup:
Please note the sequence of events: An article, 12 May, free advertising Vanessa Cecil's ME Recovery System (rather like Lightning Process), unchallenged that it gives people their lives back. Letter from me (not published in newspaper - I have put it online now). Vanessa's letter is published, 11 June, in newspaper and also online giving impression I approve it and there is proof for it. Now, this letter of mine. I urge as many as can manage to read and understand this sequence and then respond both to the paper and online (it is often a different audience). Repetition of point makes consensus stronger. Please do not leave it to others or consensus will be underestimated and the point is lost.
To expand on the above chronology, here's the original article that appeared in This Is Exeter:
ME victims taught how to recover
Wednesday, May 12, 2010, 11:00
FLORENCE Nightingale spent ten years bedridden with, it is believed, what we today would call ME, also known as Chronic Fatigue Syndrome, and her birthday, May 12, has been adopted as ME Awareness Day.
There are estimated to be about 500 people with the disabling condition in the Exeter area. Their symptoms of fatigue, pain and cognitive disturbance can range from the mild to the severe, when they might be confined to bed unable to move or speak and needing 24-hour care.
Despite years of confusion and uncertainty about the illness, its apparent resistance to treatment and its gloomy prognosis, it is now becoming clear that patients can and do recover fully. A new approach teaches patients a set of techniques that they use to rid themselves of symptoms.
At the Therapeutic Training Company, we teach the ME Recovery System which draws on the latest research in psychoneuroimmunology, the way four factors interact — our hormonal, immune and nervous systems and our minds.
I spent nearly 17 years with moderately severe ME. I was not often well enough to leave the house and when I did would need a wheelchair; stairs would be negotiated on hands and knees; meals, conversations or even thoughts would be left unfinished for lack of energy.
Now I hike, dance, travel and live a full life.
I experienced a rapid recovery through a mind-body programme and, using that as a starting point, I researched and trained in other innovative approaches to build the ME Recovery System.
Nickie Moates, a doctor's receptionist from Torquay, regained her health after three years of ME when she was "like a couch potato". Now she is able to enjoy life again — running on the beach, playing football with her son — "just being a mum again instead of a spectator".
She added: "I was sceptical but it has given me a life again – a better life than before because of what I learnt on the course"
ME Awareness Day is a great opportunity to alert the general public to both the severity of the illness and to the availability of a route to recovery.
Re: ME treatment has proven track record, Exeter Express & Echo, 11 June 2010
Cc: Vanessa Cecil, The Therapeutic Training Company; All M.E. contacts, including national and local support groups,
Unless your readers have the opportunity to see the content of my letter in response to the original article about Vanessa Cecil's claims for the "ME Recovery System" she teaches at the Therapeutic Training Company (ME victims taught how to recover, Exeter Express & Echo, 12 May 2010) - I can send you a copy to consider for publication if you do not have it to hand - and unless they read very closely the description of what it is that she offers on her website, with no guarantee of results (ME Recovery System Application pdf) they may conclude that I am favourable towards it and it is proven, neither of which is correct.
Although Vanessa's method has a different name than the Lightning Process, she was an Advanced Lightning Process Trainer and the ME Recovery System is remarkably similar, in respect of roots, procedure, cost and terms to sign up to. Due to the confusion there is over the diagnostic terms which she uses; the selective sample she screens out and subjective self-report she relies on, which distorts the statistics; her misinterpretation of the evidence for Cognitive Behaviour Therapy (CBT), which all research shows has no lasting benefit for people with M.E. (Twisk and Maes, 2009): as well as her assumed association with the University of Exeter, I hope you will try to make things as clear as you can for everyone.
I hope to have some draft proposals for our test of the efficacy of the ME Recovery System quite soon, that Vanessa will approve them in the consultation preview period and that your newspaper will keep independent scrutiny and report the outcome accurately.
Vanessa Cecil's letter of response in This Is Exeter:
ME treatment has proven track record
Saturday, June 12, 2010, 11:00
I WELCOME the interest of Dr John Greensmith, and any other researcher, in the treatment and recovery of people with ME/CFS. I also welcome any opportunity to formally evaluate the ME Recovery System that I teach and have been in discussion with third parties with a view to establishing just such a study.
Meanwhile, anecdotal evidence suggests that a substantial proportion of people who learn the system recover their health and regain their social, work and family lives. Anecdotal reports may not constitute the sort of evidence required by, say, the NHS and nor should they; something more testable is required before any therapeutic approach can be endorsed. However, that may still be several years away and if I and my clients had awaited it we would still be ill today.
The ME Recovery System has its roots in a number of interventions with a good evidence base – mindfulness and cognitive behavioural therapy among them – and that are recognised and deployed within the NHS. GPs recommend the system to their patients. Clients come through word of mouth having seen their friends' improvements.
For people to regain their lives it is necessary that this continues to be the case while at the same time a well-designed study evaluates outcomes and, importantly, identifies those for whom the system works well, works moderately or does not work at all.
I look forward to any productive correspondence with Dr Greensmith that will help to improve the lives of people with this illness.
The Therapeutic Training Company, Innovation Centre, University of Exeter
The above response from Vanessa Cecil prompted Dr Greensmith to comment further, and his extended response, as well as comments from others, can be found here.
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