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Chronic Frustrating Syndrome and Me

May 2, 2013
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This all started when I wrote a blog post on Chronic Fatigue Syndrome. In it, I ranted about my frustration and fascination with CFS, about not understanding it.

Then, after a few days, there came a – I won’t say it was a deluge – knee-high flood of comments by patients with CFS and ME. At first, I was delighted – someone was actually reading my blog! But then I got scared – someone was reading my blog!

 I love Twitter. I love the conversations on the deep and the inane that I’ve been able to have on the platform, and for the friends I’ve made on there. But what hooked me on it was the experience of shouting into the void and waiting for the echo. I enjoy writing for the sake of it and while I dream of some kind of reaction to it, I never realistically expect it. Twitter was the crystallised 140-character essence of this.

 What I’m trying to say is that to suddenly find that people were reading my work and talking about it – I suppose it’s a virtual kind of stage-fright. But with so many people reading and responding to that blog, I felt an onus to respond myself. Apologies if that has taken some time. I’m slowly getting there.

 I was first struck by the volumes of kind words that people left below that blog. I am at once grateful and immensely humbled by these responses. Thank you.

 My next impression was an education in Chronic Fatigue Syndrome. In my blog, I had complained of my knowledge, and the severe lack of it. Several patients with CFS sought to teach me, on various different aspects of the illness. One remarked that their GP had conceded that they knew more about CFS than she did. I’m certain that people with CFS are “expert patients” in every meaning of the phrase. I learnt more about CFS in that comment thread than in five years at medical school.

 Many patients mentioned the personal toll the disease had taken on them. Careers and livelihoods curtailed, followed by years of – is suffering too strong a word? For some, I think not. One patient compared it to cancer and chemotherapy. One described it as “hardcore,” an adjective I think I’ll use myself in the future. To label CFS as a disease for malingerers or fakers couldn’t miss the point more.

 I also noticed a lot of frustration towards doctors. The comments made for sobering reading for a, with any luck, future-doctor. The medical profession is not painted in a wholly wholesome light. There were grievances against misdiagnosis, diagnostic tests un-ordered or ignored and, once a “diagnosis” (CFS is a diagnosis of exclusion) is made, a sense of abandonment. Are the doctors who told patients there was no treatment, or to go away and read the internet, bad doctors? Possibly, but I’d much rather think that they are good doctors hamstrung by a lack of information and understanding. I’m not excusing their behaviour but it does highlight the critical need for a wider understanding, even of the available facts, of CFS.

 However, not all doctors were tarred with the same brush. Patients were keen to mention their experiences of good doctors too. One of the first comments hit the nail on the head, in my opinion, “good doctors listen to what I say.” Others agreed with this sentiment but added that listening is a skill many doctors seem to forget. This isn’t just a lesson exclusive to patients with CFS – it is a principle that goes to the heart of medicine. Other good points included the possibility of symptomatic treatment and, importantly, keeping patients with CFS “in the system.” Disenfranchisement helps nobody. Sadly this point was proven in another comment, “I don’t trust doctors anymore.”

 Another interesting point I picked up was the friction between mind and body. Many patients commented on doctors’ over-reliance on a psychological model with psychological therapies, and, until recently, the psychological focus for much research. In its place, patients yearned for more attention on a biomedical model, pointing out the genuine pathophysiological abnormalities in CFS.

 I’m quite interested in psychiatry. I have a lot of time for it. One thing that really bugs me is the denigration and stigma aimed at mental illness in this country. I am perennially frustrated by claims that it is less real or less serious than physical illness. I am also bothered by the Cartesian dualism between mind and body that exists in our culture. I appreciate that it was probably a very useful conceptualisation during the enlightenment but now, I think it’s holding us back.

 Why am I saying this? I am not saying CFS is psychological. I am also not saying it is biomedical. Personally, and with no evidence whatsoever, I believe there is something to be gained in a gestalt understanding, greater than the sum of its parts. With recent news that the emotional impact of stroke is grossly underestimated and overlooked, I think that approach could apply a great many things.

 I’d like to finish with this paragraph from a US primer on CFS for doctors. It succinctly states a lot of the thoughts that have been percolating in my head;

 “The onset of ME/CFS impacts the individual’s ability to work, to sustain family and social relationships, to provide basic self-care, and to maintain self-identity. These sudden losses may trigger confusion and crisis. Yet patients often receive little benefit from consultations with health practitioners due to (1) physician skepticism of individuals with ME/CFS who may not look ill and show normal findings on standard physical examinations and laboratory tests; and (2) the absence of a clear standard of care for these patients. These obstacles, in addition to significant illness limitations and unsupportive family and friends, may lead to patients feeling demoralized, frustrated and angry.”

 I would like to say thank you to all the patients with CFS who read and commented on my blog post. Thank you even more for sharing with and educating me on so many things. I won’t grow up to be a clinical expert on CFS but hopefully, there will be a little less frustration all round.

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One Comment leave one →
  1. Doopy permalink
    May 11, 2013 10:26 pm

    There is a danger of seeing patient frustrations with psychological treatments for CFS in the light of concerns about Cartesian dualism, or the stigma of mental health problems – such a view can end up promoting the view that patient frustrations would dissipate with the spread of more enlightened views about how mind and body interact. I think that this is a mistake.

    When psychological approaches to CFS are seen as justifying interventions that involve reassurance, or encouraging patients to feels a sense of control over their symptoms and adopting a positive view of the likelihood of recovery, it is important that this only occurs after informed consent is gained, and the patients are given access to accurate information about the efficacy of treatments and rates of recovery. If this does not occur, the such psycho-social management is quackery, and it is perfectly reasonable for patients ‘treated’ with encouraging words about recovery to feel angry when they do not recover.

    As well as a tolerance for the paternalistic deception of patients, there has also been a willingness to spin the results of trials in papers. For the recent PACE trial (the largest RCT for CBT and GET for CFS) the protocol laid out the criteria for different outcome measures. One of the two primary outcome measures was the SF36 PF scale. An SF-36 PF score of over 85 was required for a patient to be classed as recovered. A score of over 75 indicated a positive result. A score of 65 or under was part of the entry criteria for the trial, which required sever and disabling fatigue. At the end of the trial, patients with an SF36 PF score of just 60 were being classed as recovered, and the researchers are refusing to release data on the outcome measures which they laid out in their protocol.

    Peter White, one of the PI’s for this trial, is now trying to classing Freedom of Information requests on this matter as harassment: https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po

    An understanding of how mind and body interact does nothing to justify how CFS patients have been treated by certain researchers and doctors.

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