ME survivor to talk on BBC

Published on Saturday 21 January 2012 12:00

a chronic fatigue sufferer from the Capital is to feature in a two-part BBC documentary starting tonight.

Holly Tomas, 48, from East Lothian, will feature in the BBC Alba documentary about Mickel Therapy treatment, which she says cured her after 27 years of suffering Myalgic Encephalomyelitis, or ME.

The programme focuses on the work of Dr David Mickel, who devised the therapy.

Ms Tomas, who helps others learn the techniques she was taught to overcome the condition, said: “I am so thankful to be free of symptoms. Mickel Therapy has given me my life back and I’m fortunate to be able to share this with others.”

An Sgìths Nimheil, or The Toxic Tiredness, begins at 9pm on Monday and concludes on January 30.

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Dr John Greensmith, MECommTrust.org

Tuesday, February 7, 2012 at 06:17 PM

Remarkably, there has never been a test for the efficacy of any of the treatments - including those recommended on the NHS, alternative therapies, supplements and non medical tools - offered as a cure, or significant recovery, to sufferers of M.E. (Myalgic Encephalomyelitis) by independent researchers, who have no career interest or profit motive in the direction of results of any trials. The M.E. Community Trust.org is determined to break this duck and seeks appropriate help here to support its aim. Tests for the claims of treatments, of which Mickel Therapy is just one, are clouded by: unproven scientific theory; the requirement of patient's belief for successful outcome and being conducted by people with a vested interest in outcome. These matters need addressing by a more objective experimental design. But there is a more fundamental source of contamination of subject sample, which mars all research that must first be dealt with. In the documentary (An Sgiths NimheilThe Toxic Tiredness, BBC Alba, 30 January 2012) Dr David Mickel says that he "clumps together" Chronic Fatigue Syndrome (CFS), M.E. and Fibromyalgia as "chronic fatigue" illnesses. Incredibly, so do all studies have an incomparable selection of variously defined CFS and conjoined CFSME. In the simplest of terms, there are few High School text book rules of experimental design that these do not break and they are just not comparing like with like. It is essential, therefore, that we define a more pure group of people likely to have M.E., quite separate from the nebulous "fatigue" and its bookends "chronic" and "syndrome", as a necessary foundation, without which any work would be invalid and unreliable, the results untrustworthy and any attempt to apply findings to people with M.E. (who probably were not included), at least disappointingly ineffective and, in some cases, irrecoverably harmful. It is encouraging that Dr Mickel says he has been making strenuous efforts to secure a robust test of his therapy, using a Randomised Control Trial (as, coincidentally, does Phil Parker, inventor of the Lightning Process), though when we have been in touch with them and others, original enthusiasm has waned and fizzled out. In the absence of their discovering such a rigorous design elsewhere, I would like to propose a pilot study to address every one of these faults by: (1) defining a group of people, most likely to have M.E., quite separate from CFS and its variants; (2) having the experimental design, subject selection and statistical analysis agreed, beforehand, in a consultation preview period, with all interested parties, including the inventors, to avoid any quibbling afterwards; (3) the work monitored by independent individuals, with no career interest or profit motive in the direction of outcome, such as a representative of your newspaper; (4) any funding to be minimised by labour being given without financial reward and costs shared to be affordable. If the results showed a considerable percentage of subjects, perhaps more than two-thirds, had measurably improved following treatment, for example by a return to work and resumption of previous social life, then, subject to replication with larger samples, we should recommend that this treatment be freely available on the NHS; if, on the other hand, the results were less than chance, or disappointingly small, again after replication, we would expect advocates and practitioners to withdraw claims of efficacy for M.E. We should also expect to do follow-up studies to see that they had not relapsed which, astonishingly, have never been done. We shall know from the replies (or lack of them) from the people identified here - researchers, inventors, practitioners, press representatives and any other interested parties - the actual level of enthusiasm and sincerity that there is for truly rigorous scientific testing of all treatments, not only Mickel Therapy, offered for people with M.E. In thee absence of any such willingness or cooperation to help, we are determined to progress with such trials at the rate our resources will permit.

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Dr John Greensmith, MECommTrust.org

Wednesday, January 25, 2012 at 06:54 PM

In the documentary, ME: An Sgìths NimheilThe Toxic Tiredness, Part 1 (BBC Alba TV, 23 January 2012), after listing symptoms, "which lead to a lifestyle that is awful," Dr Sarah Marr says that, although for a few patients it may run its natural course, M.E. (Myalgic Encephalomyelitis) is, for the majority, a lifetime illness, "though," she concludes, "it is not fatal." Tell that to the surviving families and loved ones of Lynn Gilderdale, Sophia Mirza, amongst others around the world and then wonder how many more have never been tested in life or post mortem. It would seem most intelligent to follow up what they had in common after death - basal ganglionitis - for frequency, cause and any inflammatory similarities of sufferers still living with M.E. Yet we continue to squander precious funding on management techniques which have so clearly failed for at least 25 years, or why do so many people remain ill for decades.

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tinahagen

Tuesday, January 24, 2012 at 12:35 PM

ME is just one of many conditions that can cause chronic (toxic) tiredness. Most common medical reasons are listed here: http:www.stop-being-tired.commedical-causes-of-tiredness. Of course, chronic tiredness can also be caused by lifestyle, allergies, lack of essential nutrients, sleep disorders, and so on.

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antiparasite

Sunday, January 22, 2012 at 12:57 AM

The DEA, UN, EU and every other enforcement agency for the chemical industry will be going after Dr David Mickel.... Cannabis is also said to be good for this condition among others -- http:www.meassociation.org.uk?p=4756

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