Listen to Post Cyntaf, a Welsh language morning news programme on Radio Cymru featured ME on Friday 16 Dec 2016.
Part 1 (17.47 mins – 22.22mins)
Interview with student Alwen Messmah from North Wales, and her mother Sian
Part 2 (1.13.48 – 1.20.54)
Interview with teenager Zac from Porthcawl and GP Harry Pritchard
A Cardiac Marker for Disability in Myalgic Encephalomyelitis, Written by Carol Sieverling (2004), Edited by Maryann Spurgin (2016).
Forward (2016):
The fascinating thing about this article is that everything from chemical allergies to immune dysfunction in ME is explained in terms of circulation problems. This excellent piece on ME and heart issues was written by Carol Sieverling.
It was extremely long, putting people off from reading it. I have edited for length, but not for content, grammar or punctuation. I did edit out most treatment advice since Cheney’s treatment advice changes, and I edited out anything that made it longer if it did not contribute to understanding.
Any additions by me of new information have been put in brackets saying: [Maryann Spurgin’s note:]. All others are by Carol or are quotes from Dr. Cheney or where noted from a patient. This is Carol Sieverling’s interpretation of transcripts and tapes of conversations that took place between Dr. Paul Cheney, Carol, and Victoria Bell in 2004.
All other comments are statements from Dr. Cheney that have been slightly paraphrased [by Carol], but maintain his original meaning.
–Maryann Spurgin.
A concept central to Dr. Cheney’s understanding of this illness is decreased cardiac output:
The focus of this article is based on the following publication: “Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome.” Peckerman, et al: The American Journal of the Medical Sciences. 2003; 326(2):55-60.
Dr. Cheney stated, “This is the best, most important publication in 20 years.” And: “This was published the year I left practice, 2003. The senior author is Natelson, and the principal author is Arnold Peckerman. [Maryann Spurgin note: this study was NIH funded]
Video posted on the RME Sverige You Tube channel, 19 Nov 2016:
The RituxME and CycloME studies – Ongoing Clinical Research in the ME/CFS Research Group, by Öystein Fluge, MD, Dep. Oncology and Medical Physics, Haukeland University Hospital, Bergen, Norge
Watch more videos from the Swedish National Society for ME
ME Research UK comment, 7 Dec 2016: Genetic variation affects adrenergic receptors
Given the estimated 20,000 genes that determine the characteristics of human beings (and make up the human genome), identifying those that may be responsible for the development of ME/CFS is a challenge. But the task can be simplified by first considering the symptoms of the disease, and then targeting the search to those genes known to be involved in the underlying processes (for example, the nerve dysfunction that causes difficulties in standing).
This type of research often looks for small genetic changes, known as single nucleotide polymorphisms (SNPs), which vary between individuals. Most SNPs have no effect, but some can alter an individual’s susceptibility to disease.
An Australian study published recently in the journal, BMC Medical Genetics, has taken this approach to look at a range of potentially relevant SNPs in ME/CFS, assessing how frequently they occurred in a group of 95 patients with the illness, and in 77 healthy people.
The investigators focused on SNPs affecting three types of structure involved in transport and communication between tissues and cells in the body; namely, transient receptor potential ion channels, acetylcholine receptors and adrenergic receptors.
Their main finding was that one specific SNP, affecting the gene ADRA1A, occurred in almost half of the ME/CFS patients, but in only a quarter of the healthy people.
ADRA1A is responsible for the manufacture of a specific type of adrenergic receptor which controls the contraction of smooth muscle cells. This control is essential in a range of biological processes involving the blood vessels, gastrointestinal system, kidneys and other organs.
It may be that ADRA1A is involved in the development of ME/CFS (at least in a subgroup of patients), and that further investigation into the function of the related adrenergic receptors in the disease may help explain the cause of some of the symptoms experienced by patients.
Genetic studies of this kind represent a potentially fruitful area of ME/CFS research and, thanks to your continued support, ME Research UK has itself funded projects analysing the relevance to the illness of SNPs, microRNA molecules and DNA sequencing.
However, we are a long way from being able to apply these findings to the diagnosis and management of ME/CFS. For a start, the results of individual studies such as this need to be replicated by other research groups and in other groups of patients.
Read info about: ME Research UK ongoing studies
BACKGROUND: Publications from the PACE trial reported that 22% of chronic fatigue syndrome patients recovered following graded exercise therapy (GET), and 22% following a specialised form of CBT. Only 7% recovered in a control, no-therapy group. These figures were based on a definition of recovery that differed markedly from that specified in the trial protocol.
PURPOSE: To evaluate whether these recovery claims are justified by the evidence.
METHODS: Drawing on relevant normative data and other research, we critically examine the researchers’ definition of recovery, and whether the late changes they made to this definition were justified. Finally, we calculate recovery rates based on the original protocol-specified definition.
RESULTS: None of the changes made to PACE recovery criteria were adequately justified. Further, the final definition was so lax that on some criteria, it was possible to score below the level required for trial entry, yet still be counted as ‘recovered’. When recovery was defined according to the original protocol, recovery rates in the GET and CBT groups were low and not significantly higher than in the control group (4%, 7% and 3%, respectively).
CONCLUSIONS: The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.
Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial, by Carolyn Wilshire, Tom Kindlon, Alem Mathees, Simon McGrath in Journal Fatigue: Biomedicine, Health & Behavior Pp 1-14 [Published online: 14 Dec 2016]
MEAction blog post, Simon McGrath, 14 Dec: The PACE trial: where “recovery” doesn’t mean getting your health back
ME Australia blog post: Case report: Alison Hunter by Christine Hunter, 13 December 2016
For the past decade patients diagnosed with chronic fatigue syndrome have been shamefully mistreated due to government policy failure and lack of medical education.
Case Report by Sukocheva et al.BMC Infectious Diseases (2016) 16:165, Coxiella burnetii dormancy in a fatal ten year multisystem dysfunctional illness: case report.
Alison Hunter Memorial Foundation The Foundation is an enduring memorial to Alison Hunter and all those whose lives have been devastated by ME/CFS. Alison died in 1996, aged 19, from complications arising from ME/CFS which included seizures, paralysis, gastrointestinal paresis and overwhelming infection resembling Behcets Disease.
Rosa rainbows blog post: How me and my ME became worse, 17 September 2016
Extracts:
I haven’t written a blog post for about two months, and the reason is that I have become very ill. For my friends who do not know much about ME, I hope you will read what I am about to write so you can understand the severity of the situation in the UK – it is not just happening to me, but to many other hundreds of thousands of people across the UK.
I have both Lupus and ME, and while Lupus is taken somewhat seriously, ME absolutely isn’t. Looking back, from June onwards, I was starting to notice more and more days when I felt overly unwell. This coincided with the time that I was put on a new CBT/ Graded Exercise trial, called the PRINCE Secondary Trial, run in St Thomas Hospital in London…
For a few months, from about March to June, I had been feeling better. Before then, I had spent about 8 months with complete bed rest and meditating and reading. It had made me feel stronger. I was doing gentle stretching and yoga to help my muscles. So now I was able to leave the house once in a while in the wheelchair, and was also able to walk for about 5 minutes with breaks, once a week on good weeks. I was even able to go to the cinema and see my friends for meals. Life was good!
But from June, I was enrolled on the PRINCE Secondary Trial. It was a trial where I had CBT sessions – but the sessions were based on a special form of CBT which told me I had false illness beliefs, and in every session I was given an exercise programme to do. The booklet I was given said, “The best advice would be to try out this practical approach because nothing will be lost by trying but much may be gained“. I was told to increase my exercising – so to go on a 5 minute walk, twice a week, instead of the once a week I was able to do. I did what they said, but was starting to feel more unwell than before, and told my therapist – she told me to meditate more, rest more in between (although that was all I was doing in between anyway!), and continue the walking. So I did.
Then, she told me to increase it to 5 minutes, three times a week. I was given a booklet that told me that it was my beliefs that were perpetuating the illness, that even if I felt unwell or got pains, or wanted to cancel plans, I should rethink it, and not think negatively. I was having more and more “bad” days but kept going. The message was that even if I got pains or dizzy or got tired, it was my body getting used to new patterns and doing more exercise and I shouldn’t look into it too much.
I booked a trip to wilderness festival, thinking, well even though I am feeling more and more ill, at some point my body will get used to its new pattern. and I still wasn’t as bad as I was last August (when I first got ill) so I continued.
During wilderness, I became very unwell and had to come back early by cab all the way from Oxford – by this point my body had gone numb and I was in tears. I came back from Wilderness, and I went into hospital a few days later and was told I should get out of my wheelchair and be more active. When I told them I often had a lot of pain in my arms, which is why I couldn’t do a lot of things and needed help with having a bath, they told me to do weights.
By this point in the trial, I was too unwell to travel to my appointments so was having phone appointments – I was told to do a 10 minute walk. During the walk, my legs wobbled and stopped being able to work properly. Despite this, I desperately tried to push through it and did a yoga session a few days later (the trial therapist knew about the yoga too), because I had been told that that pain wasn’t a big deal. And that was when my body finally collapsed in exhaustion.
I had shooting, electrical-like nerve pain throughout my arms and legs, it was terrifying and I couldn’t sleep with the pain. I had palpitations, my body started shaking and twitching, I would burn up one minute and be freezing cold the next – I was feverish for over a week.
I got even worse orthostatic intolerance, which means I couldn’t tolerate being upright or even sitting upright, sometimes even for more than a few seconds without feeling nauseous and dizzy and shivery. I felt sick all the time, found it difficult to tolerate food (or even sit up to eat) and the headaches were there all the time. My brain felt foggy. I became sensitive to light, and sound, and had to lie in a darkened room or I would get palpitations.
The smallest thing I did- even eating a few spoons of breakfast, meant I had to lie down for hours to recover. I needed my mum and my boyfriend for every single thing. I couldn’t walk a few steps or type without horrendous pain. I couldn’t talk more than a few words or the exhaustion was too intense. I could drag myself to the toilet next door a few times a day, and that was enough to make me more unwell.
All in all, I was back to how I was last year. This relapse happened in the middle of August. It is now a month on from that, and although I am a little better, I am still very unwell – it has taken a lot out of me, lying down, to write this on my phone. And I know I will feel very unwell after this, and am feeling it now. But I am writing all this, however horrible it is to talk about, because I want people to know this is the reality of how ME can be – that a young woman, who was getting better by herself with rest, and who had already lost so much, can be pushed into this state by being told that they should just “push through it”. And I also have Lupus, and the complications which arise from that.
Private eye Medicine Balls column, 10 December 2016: ‘ME campaigners don’t ignore CBT and GET… but they do challenge the science’ Private eye Medicine Balls column, 25 November 2016: ‘ME cluster bomb’ [Written by ‘M.D.’, the nom de plume of Dr Phil Hammond and reproduced by the ME Association]:
The Eye received many supportive letters for stating in the last issue that CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) has biological causes, but also some criticisms.
As one doctor put it: “Every illness has a physical, psychological and social component, and limiting diagnosis or treatment to only one aspect of someone’s illness is likely to lead to a much poorer outcome. This ‘triple diagnosis’ applies to any disorder you care to consider, although obviously in varying proportions. The one exception seems to be CFS/ME where any suggestion that there might be a psychological or social component leads to criticism. That cognitive behavioural therapy (CBT) is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.”
ME campaigners don’t ignore the fact that CBT and graded exercise therapy (GET) have been shown to work in randomised controlled trials and are endorsed by lofty scientific institutions such as the Cochrane Collaboration and NICE, but they do challenge the science.
The PACE trial, set up to compare the effectiveness of the four treatments for CFS/ME, has caused particular controversy and activists have had to fight to gain access to sue of the data which they are re-analysing to determine if claims about the efficacy of GET and CBT have been over-stated. For the PACE researchers to accept any such re-analysis would require it to be published as a credible peer-reviewed journal with independent analysis that is free from bias. It is a long and complex process.
M.D. agrees that the split between mind and body is unhelpful, and there are indeed physical, psychological and octal elements in all illnesses, either as causes or consequences. But it was doctors who initially dismissed a physical basis for CFS/ME, and as a consequence insufficient attention and resources have been given to doing large scale biological nutritional and genetic studies that might provide alternative treatments to the non-drug options currently on offer.
Many of us take walking for granted. However, for many older people, walking is their main form of transport, and essential to maintain independence and to reach vital public services such as GPs, pharmacists and libraries. Walking is also a great way to stay active, helping to maintain health and wellbeing, and reducing the risk of falling.
We have teamed up with Living Streets and CADR (the Centre for Ageing and Dementia Research) to collect older people’s thoughts and experiences of walking in their neighbourhoods. If you’re aged 50 or over, we’d like to know why you walk, how often you walk, and what helps or hinders you in walking where you live.
We’ve put together a short questionnaire to find out how age-friendly our streets are for people walking. In 2017, we will produce a report summarising the findings of the survey, and making recommendations of how we can make our towns, villages and cities better places to walk, and grow older in.
You can download the questionnaire at www.ageingwellinwales.com/streets
