Toxic Tiredness examined on TV
Allison MacColl, a nurse and mother from the Isle of Lewis who suffers from ME and features on the new BBC ALBA documentary.
WHAT it is like to have an illness which makes sufferers feel so tired they can’t put one foot in front of the other, or even drink a glass of water, and which many doctors don’t believe even exists, is examined in a new two part BBC ALBA documentary: An Sgiths Nimheil (The Toxic Tiredness).
ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome, now affects around 250,000 people in the UK – including a number of islanders – but medical opinion remains split over its cause.
It is characterised by severe fatigue that can leave sufferers unable to continue with normal life.
Some claim its roots are purely physical, occurring post-virally, others believe that psychological triggers are involved.
The truth is unclear and there are wide divisions between the different schools of though, all explored through the new Trusadh documentary.
The first show focuses on five people who have ME, finding out the impact the illness has on their lives and their quest for respite – Allison MacColl, a nurse and mother from Lewis; Sean Ankers, a divinity student from Inverness; Neil MacLean, a policeman originally from Lewis but no living in Easter Ross; Kim Ayres, a photographer and entrepreneur from Dumfries; and author Nasim Marie Jafry.
The second programme takes a closer look at the scientific debate behind the frustrating uncertain world of ME and its treatments, exploring the work of David Michel, a Scottish doctor who believes he has found the ‘cure’ for MR though a talking therapy which addresses an imbalance in the emotional centre of the brain.
Although he has no scientific proof, he claims a positive success rate.
The Trusadh team follow Allison and Kim as they undergo Mickel’s controversial therapy, as well as hearing a very different perspective on the illness from neurologist Prof. Peter Behan, who has carried out ground-breaking studies on ME at the Southern General Hospital in Glasgow.
Trusadh – ME: An Sgiths Nimheil / The Toxic Tiredness begins on Monday, January 23 and concludes the following week, Monday, January 30, on BBC ALBA.
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There are 4 comments to this article
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drjohnMECommTrust
Tuesday, February 7, 2012 at 05:58 PMRemarkably, 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.
Ceci
Wednesday, January 25, 2012 at 08:54 PMThank you so much Joanne for commenting. I have been very ill for the last six years, and diagnosed with M.E by an acupuncturist after visiting a clinic for alternative help - the doctors were unwilling to diagnose me with anything. They eventually accepted the acupuncturists diagnosis (I believe this was due to convenience), before making clear they could not cure me. I have had (for the last six years) a ring-shaped pimple rash on my foot which becomes most prominent in hot weather. I have also suffered with burst cysts - occurring during both the spring and autumn months. Yet, no one has ever attempted to educate me on the symptoms of Lyme disease. I have suffered incredible neurological and autoimmune pain, not to mention the psychological implications and hallucinations. Thank you for taking the time to comment on this post as I believe you have enabled me to accurately diagnose myself.
cfs boston
Saturday, January 21, 2012 at 08:51 PMPending Moderation
JoanneDrayson
Friday, January 20, 2012 at 05:05 PMYou can keep your talking therapy just oral antibiotics cured my MECFS but taken long term. It took 4 years to properly diagnose me, as my symptoms of arthritis and muscle weakness but many more deteriorated the 5 doctors and 3 Rheumatologists diagnosed me with Fiibromyalgia, MECFs, Arthritis, muscle weakness, Musculo skeletal disease, Polymyalgia Rheumatica and then a chance course of antibiotics resulted in a significant improvement and led GP to suspect Lyme disease - an illness from an infected tick ( the smallest the size of a poppy seed so we are not always aware of the bite). Many areas of the UK and especially areas of Scotland are endemic for Lyme Disease but awareness is poor and even doctors miss the obvious early signs of bulls eye rash ( although not everyone gets that). Once diagnosed - the rash is diagnostic and mustn't wait for a blood test because it can take 6-8 weeks for antibodies to develop and by then the infection will have disseminated throughout the body. Actually in any case blood tests can miss upto 50% of cases. If treated adequately in the initial stages then later health problems can be avoided but if that window of opportunity is missed then it can take very long courses of antibiotics to recover our health. There is much controversy about this disease but recent research in primates shows that short courses once infection has disseminated may not be sufficient to clear the infection. Infection can persist relapse a remit. I recovered fully how many people with years of arthritis and muscle weakness recover on just antibiotics. At my worst I had difficulty raising from a chair and walking across a room, for 3 12 years I could not walk up or down stairs properly and was retired early on the grounds of ill health from the Civil Service. Now I have no pain, no disability, no arthritis or muscle weakness - I can garden and cycle again. How many people with MECFS have been thoroughly assessed to see if Lyme Disease could be the cause of their illness. Many of those doctors in the forefront of dealing with patients with MECFS, Nancy Klimas, Kenny De Merlier, Kenneth Friedman, and more recognise that about 30% of cases of patients actually suffer from Lyme Disease. How long before main stream medicine starts to recognise this. For more information visit UK charity Lyme Disease Action.
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