Welcome to Phoenix Rising!
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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Who ? Where ? What ? If you are going to accuse posters here of something, at least have the courage to demonstrate what it is you are accusing people of and exactly who it is you consider to be guilty of these terrible heresies.
What potential for drug treatments ?
(My bolding)Patients do not have the resources to disseminate the truth widely, and authoritatively, and as such, false information has been propagated as 'fact' by those in positions of authority, with patients seemingly powerless to change it.
A specific example is the Lancet 'commentary' that falsely states that there was "30% recovery rate" in the PACE Trial, when in fact, no "recovery" was reported in the PACE Trial paper, and the "response rate" was only 11% to 15%. (If only 15% of participants 'improved', then "30%" could not have 'recovered'.) The Lancet 'commentary' was absolutely an error, but the Lancet refuses to change it. Why?
IMO this is quite wrong, the majority of MPs will have been contacted at some time or another by consituents who have an M.E/CFS diagnosis, and who have sought help with benefits, housing etc. Additionally lots of us have been writing to our on MP, MSPs AMs etc for decades.
This concerns how politics works at the Party level and how Parliament works - although interconnected they are different. Party operatives will certainly notice anything that involves a member of the upper house, and in this case Mar will be marked accordingly (nutjob) and the association of her cause (M.E/CFS) will be logged in similar association. Faced with a choice between serious academic and nutty old Peeress - M.E/CFS gets shifted into "expert territory, politicians to keeps hands off ! " The asking of questions is classified by the various Government and Oppsition business managers relative to their selfish perspectives along the lines of - "helpful", "unhelpful", "damaging", or "bloody stupid and waste of all our times". Memories in Parliament are long.
I think scandal is too strong a word for what I intended to say. Its about those in power being seen to have ignored something or being out of touch with the world. I don't think a strategy of blame is useful but a strategy of offering good rewarding positive options often works.Politicians only fear those scandals that apply specifically to them - if there is no one person or Party to 'blame' then the scandal has little or no purchase. Even if one could construct a campaign which identified M.E/CFS patients as legitimate 'victims' (only children, mothers and heroes realistically have a chance to qualify) of scandal - who is there to 'blame', there's always the get out that science hasn't offered any option for intervention so what is that the Politicians should/could have done.
What potential for drug treatments ?
The APPG is a potentially valuable line of communication, but Politicians need to have something on which to act, simply saying here's a problem isn't awful ? doesn't provide the average politician with anywhere to go. Asking for more money for research without some argument about why and how the existing research budgets should be 'cut up' differently is an argument without traction. Complaining about how previous budget allocations were spent, will not interest most politicians - their concern will be 'what now ?" As far as alerting current MPs - every constituent can write a basic letter with basic information - but unless we have some to ask our MP to do, then there is no chance of the MP, or MSP or AM acting on our behalf.
From: Wessely, Simon
Sent: 15 December 2012 10:02
To: MAR, Countess
Subject: your letter.
Dear Lady Mar
Thank you for your last letter and the accompanying clarification. I am happy to confirm that I am in agreement that you may publish this correspondence where you see fit.
Now let me address the specific question that you ask. As a part of a programme of research over many years, colleagues and I have shown that perpetuating factors are different from those that trigger the illness. So, when you ask "do you still believe that ME/CFS is "perpetuated predominantly by dysfunctional beliefs and coping behaviours"? my answer is that I think the evidence is compelling that symptoms, disability and distress can indeed be perpetuated by what people believe about their illness and how they manage it. This is true of very many disorders, and says little about what causes illness, but about why some people improve more than others. Turning to CFS I say to patients that having this illness is like being given a certain hand of cards. With that hand, there are better and worse ways of playing the hand. What we can do is help you play that hand better. Continuing the analogy I often add that what we can't do at the moment is give you a new set of cards. And so I say that in my opinion as a researcher and clinician, either CBT or GET are the two ways in which we can currently help you. I share with them that these are currently the best treatments that we have, that they are not perfect, but are safe, and that if it was me, I would try one or the other, but of course it is their choice. This view says nothing about what causes the illness, but speaks to how we can best help patients improve their quality of life now.
In clinical practice I repeatedly see that this approach helps patients. Since there are no other treatments currently available that have been reliably and repeatedly shown to be both safe and effective, I think that opposing their use is unhelpful to patients and their families. And for avoidance of doubt, and mindful of the communication error with which we began this exchange, may I make it clear that I know that you are not one of those who have opposed making CBT available within the NHS to assist CFS sufferers improve their quality of life, and have indeed supported this. I do believe that this is an area in which there is indeed common ground between us. Likewise, your recent raising in the Upper House concerns about the clinical networks that were established by the last CMO in 2008 but whose future is now in doubt reflects similar concerns that are held by the vast majority of NHS clinicians working in this field and will no doubt be appreciated by patients and practitioners alike.
So this is what I tell patients about CBT and GET at the moment. Like any decent doctor, I will change my views and hence advice when the evidence changes - for example when a different treatment approach proves to be as safe but more effective than either CBT or GET , and indeed would be delighted to so.
Yours sincerely
Professor Simon Wessely
King's College London.
Have I missed the discussion of Wesselys latest reply
http://www.meactionuk.org.uk/Mar-Wessely-correspondence-update-171212.htm
From: MAR, Countess
Sent: 17 December 2012 12:03
To: 'Wessely, Simon'
Subject: RE: your letter.
Dear Professor Wessely
Thank you for your letter of 15 December 2012.
I have read your letter several times and it is still not clear to me whether you believe that ME/CFS can be reversed fully by CBT or GET, as set out in the models described in the PACE trial, published in the Lancet in February 2011, or whether you consider them to be palliative interventions only, to be offered in the hope that they will increase functionality.
You may recall from the Lancet report:
CBT was done on the basis of the fear avoidance theory of chronic fatigue syndrome. This theory regards chronic fatigue syndrome as being reversible and that cognitive responses (fear of engaging in activity) and behavioural responses (avoidance of activity) are linked and interact with physiological processes to perpetuate fatigue.
GET was done on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome. These theories assume that the syndrome is perpetuated by reversible physiological changes of deconditioning and avoidance activity.
There is abundant evidence on the record that you did believe ME/CFS to be a somatoform disorder. Is this still the case?
I look forward to a definitive answer.
Yours sincerely
Mar
It sounds like he is on the back foot. If he truly believed that his theories help improve people's function than thats ok but why does he have an avoidance for the physiological abnormalities found in cfs/me like chronic infection, immune abnormalities that have been found, these abnormalities are closer to the cause of this illness. Wouldn't treating the illness be more appropriate then helping people to live in a crappy world??
*Personally, I still regard these as therapies - I know it might not make a difference in terminology - but to me they are not treatments for the condition itself.
...a cognitive–behavioral model has been proposed whereby primary MS disease factors trigger fatigue, which is then perpetuated or worsened by individuals’ cognitive, emotional and behavioral responses to the symptom [27]. Thus, breaking the vicious cycle of fatigue by modifying unhelpful cognitions (e.g., ‘this fatigue must mean I am having a relapse’) and behaviors (e.g., excessive rest and avoidance of activity) should help reduce fatigue. CBT has been effective in treating fatigue in other chronic conditions, including chronic fatigue syndrome (e.g., [6])...
CBT and MS Review 2010: http://www.ncbi.nlm.nih.gov/pubmed/20819010
Edit:
I posted this on one of the other (many) threads surrounding this issue. It was my first 'hit' when looking for CBT and MS. That review does go on to look at the consideration being made to CBT and it's effectiveness in helping to modify the effects of the actual physical cause of MS i.e. the neurological cause. So, even if ME is found to have a definite neurological (or other) cause - as I said above - this will not automatically see the removal of CBT as a recommended therapy.
Further to the above - sorry - not everyone will of course be referred for CBT (or GET for that matter as in my own case). I suspect there are several reasons for this but one will definitely be that the referring physician and the patient simply feels they are not going to be appropriate or indeed useful. Who here doesn't feel they are managing as best they can? Maybe we are - maybe though - we are not.
Also seeBehavioral interventions in multiple sclerosis: a biopsychosocial perspective.
Heesen C, Köpke S, Kasper J, Poettgen J, Tallner A, Mohr DC, Gold SM.
Source
University Medical Center Hamburg-Eppendorf, Institute for Neuroimmunology and Clinical MS Research and Department of Neurology, Hamburg, Germany. heesen@uke.uni-hamburg.de
Abstract
Managing uncertainty is a major challenge associated with the diagnosis of multiple sclerosis (MS). In addition to physical symptoms, neuropsychiatric symptoms are highly prevalent in this disease. Depression in particular is more common in MS than in other chronic diseases. While substantial achievements have been made in the therapy of MS and an increasing number of immunomodulatory treatments are now available, the long-term benefits of these are still a matter of debate. Importantly, while the approved therapies show good efficacy on inflammatory lesions and relapse rate, and may slow certain aspects of disease progression, improvements in function have rarely been reported. On the other hand, behavioral interventions have recently been shown to significantly improve fatigue and depression as well as motor function. In addition, recent evidence suggests that group education or face-to-face behavioral interventions may decrease inflammatory disease activity (such as relapse rate or lesion formation measured by MRI). Therefore, behavioral interventions not only ameliorate symptoms but may have the potential to modify the disease process itself.
If we were to take wessely's cards analogy I would have thought the most effective thing would be to have an ocupational therapist look at your activities of daily living and suggest adaptations and techniques to make them easier so that you minimised energy usage on those activities and could therefore do other stuff with your cards.We know what Mar is trying to do. Wessely - as a psychiatrist - is trying to say that if one believes that ways in which a patient (any patient) manages their illness and thinks about their illness can lead to greater loss of quality of life - then to propose a model which essentially says 'we can help support you to overcome these unhelpful beliefs' is a good thing - for some people who perhaps need this support.
.
If we were to take wessely's cards analogy I would have thought the most effective thing would be to have an ocupational therapist look at your activities of daily living and suggest adaptations and techniques to make them easier so that you minimised energy usage on those activities and could therefore do other stuff with your cards.
I said about sleep above. Well there's nothing I can do about it. I haven't been able to stop the vivid dreams for example and have had to learn how to best respond to them along with the sleep disruption in general. No 'aid or adaptation' is going to help me to do this - or to learn to live with the fall-out from this aspect of the condition either.
iI think the general attitude of "there's nothing I can do to fix it" is completely incorrect, and it seems to be stopping patients and doctors from looking much further than whatever the NICE guidelines say is helpful.
Wrong. There are -causes- to sleep problems, and in many cases there are relatively simple fixes to go with them.
I think the general attitude of "there's nothing I can do to fix it" is completely incorrect, and it seems to be stopping patients and doctors from looking much further than whatever the NICE guidelines say is helpful.
I don't do this anymore and the other measures as well as the Sominex - help me to get more than 1-2 hours at a time. Not always but sometimes. Nothing has prevented the vivid dreams or the sleep paralysis or indeed the 'fitting' that may or may not be connected (I do have an Epilepsy diagnosis). So if you'd let me know what it is you think might additionally help I'd be obliged - because this hasn't changed (except during acute phases perhaps when I oversleep) for my 15 years. Thanks.
To use his card analogy, GET is the JOKER in the pack.
I have experienced it first hand and I can state categorically that it is absolutely not safe for everyone. Perhaps not for most. It made me very ill, very quickly and for a very long time and I have heard others state that they had the same experience as me.
Why then is it different for those who feel that CBT and/or GET and/or Activity Management and/or prescribed symptom management pharmaceuticals - have had similar outcomes? Dos it really matter to the individual concerned? I doubt it very much and yet it seems to matter a great deal to those who are adamant that CBT and GET have no place whatsoever in an overall treatment programme for ME.