Wednesday, 11 February 2015

James David Chapman on SEID, & IOM Diagnostic Criteria

Question. ME patients come with baggage. In addition to a devastating illness that perfectly and dynamically resists our best efforts, we have spent decades carrying the weight of social disbelief, denial and mistreatment. Yesterday, Feb. 10th 2015, the Institute of Medicine, IOM presented us with a choice: Do we want to change the name and diagnostic definition of our condition? We should, I think, be grateful for the choice at least. M.E, Myalgic Encephalomyelitis and CFS, Chronic Fatigue Syndrome consume life and the number of choices we are allowed to make is very limited indeed. The IOM panel has worked hard and, in addition to their broad review of the available research (9000+ documents), they have listened carefully and respectfully reported back to us as patients. Making choices is exhausting when you are unwell. We will have to fight the “brainfog” to read and understand and then we will have to spend huge amounts of our energy discussing, bickering and worrying over the years to come. The reception of the IOM criteria were always going to be coloured by the fact that our community advocates and physicians wanted the adoption of a different, pre-existing criteria: The Canadian Consensus Criteria, or CCC. That our advocates were overruled on this *at the outset* did not appear to bode well. Thankfully, with our primary symptom PEM, (Post Exertional Malaise), front and centre the IOM diagnostic criteria are most certainly worth discussing. Further, they do appear to have a strongly physical, as opposed to psychological bias and could, in the best-case scenario, spell the end for the wearisome label "Chronic Fatigue Syndrome". Many of us would dearly wish to unpin the scarlet letters: "C.F.S." from our coats and will, I think, welcome the IOM’s report. Even the discussion and challenge to the status quo itself will increase awareness and bring light to our situation. The IOM presents a new name: Systemic Exertion Intolerance Disease, SEID; It’s clearly a bit of a mouthful (the cool disease names in medicine must have already been taken). The IOM's decision to found a new name on our primary symptom is extremely sensible: PEM is one of the few things that our community generally finds agreement on and causation is still debated. The name change: "CFS -> SEID" may well be seen as a step in the right direction whereas, conversely, the name change "ME -> SEID" may well be perceived to be a loss of ground. This may mean that SEID is received differently in Europe than in the US. I think it is fair to say that the success of the new IOM criteria will be judged on the uptake of the name, and, to be clear: renaming is a very bold move. Many patients cling tightly to Myalgic Encephalomyelitis, M.E, and as well they should for it has withstood continual attack for decades and has itself provided patients with an important degree of protection. A diagnostic definition founded upon subjective symptom experience as opposed to objective, measurable, signs is certainly going to be controversial. Further the suggestion of further name changes in the future is extremely unappealing (though perhaps inevitable in a field where research has been so limited). More concerningly the IOM did not feel able to perform the sub-grouping most believe to be necessary within the heterogeneous population defined by "CFS" and the broader criteria of the past, (eg: Oxford). Sub-grouping is important because the criteria for “CFS” may have, paradoxically, created a superset containing both patients who are helped by exercise and patients who are harmed by it. The vital first job of any new diagnostic criteria that attempts to reclassify CFS patients should be to separate those with subjective fatigue (more akin to “acedia”) from those with objective, physical, conditions. This would allow all patients, subjectively and/or objectively unwell, to be directed to appropriate treatment. For example: every MEcfs patient must choose whether to respond to symptoms with rest or exercise. A patient's life, and certainly their quality of life, may well depend on getting this decision right (perhaps within the first 6 months) and physicians cannot, I think, leave patients to make this vital choice alone. Conversely, patients need to be able to see both options presented to them fairly. The IOM criteria have much in common with the strong, Canadian Consensus Criteria, CCC. This can be viewed in a negative light, presenting SEID as little more than "truncated CCC" or we can choose to see the existence of CCC, ICC (International Consensus Criteria) and now the IOM SEID criteria to be mutually reinforcing and to present a credible body of work pointing towards an objective and clearly defined disease. The IOM report helps to underline this by rejecting suggestions that the condition is imagined, psychosomatic or the result of phobia. Many M.E patients report, (and have reported for many years), that Graded Exercise Therapy, GET made their symptoms worse – much worse. I think "Exertional Intolerance" makes GET, more difficult to justify but a stronger, more explicit, statement on GET by the IOM would be very helpful. Linguistically, "Intolerance" can still allow physicians to state that SEID patients might helpfully gain tolerance to exertion through gradual exposure to exercise. However, this situation is perhaps unavoidable: Nothing seems to be able to kill off GET in some physicians' minds! Indeed, before the IOM report day was done, the phrase "counter intuitive" had been used online to simply flip over the whole patient experience of Post Exertional Malaise in an attempt to justify GET. Perhaps, realistically we must accept the persistent inversion of MEcfs patient reportage cannot be ended by one single report. It is very easy to succumb to optimism when, after decades of denial, your condition appears so thoroughly validated at the highest levels. It is also very tempting to see a major shift occurring in MEcfs at present. The initial reaction of many patients and advocates online to IOM SEID has been positive. However, many have reacted to SEID with horror. “Stockholm Syndrome” was even raised. Many MEcfs patients have reported mistreatment and many consider their mistreatment to have crossed the line into abuse. The concern therefore is that the community might accept IOM criteria merely as a reaction to misplaced feelings of gratitude and thankfulness that it "wasn't as bad as it could have been". In the end, I think that IOM SEID itself isn’t cause for celebration nor cause to dress in black. It will be what we make of it. Those who have concerns must voice them and in so doing will protect the community; at the same time, those who are optimistic will, I am sure, use SEID to push the issues forward and inch us ever closer to resolution. I think members of the MEcfs community must judge SEID and the IOM diagnostic criteria on merit and in comparison with CCC, ICC (and other ME definitions). In general terms, as is often the case in MEcfs, we find a polarisation between those who wish to take a pragmatic position and those who want to maintain firm principles. Both viewpoints have their respective strengths and weaknesses - and we must each determine our own view. The isolation of our condition in combination with social exclusion has, for years, left us alone in the dark. We now find that the 'net is bringing us all together. Whatever researchers, physicians or advocates may say, MEcfs patients will now make their own decision about SEID. I suggest we trust them to do so. They are smart, informed, and passionate and, in a very real sense, their lives depend on making the right choice. James David Chapman. @batteredoldbook

3 comments:

  1. I think this is a revelation. I'm going for my yearly physical tomorrow and I'm going to talk to my doc about how I (have always) fit these criteria. Nice to find out at 71!

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  2. A quite interesting, though rather long, article. I am however unhappy with these sentences,

    'The vital first job of any new diagnostic criteria that attempts to reclassify CFS patients should be to separate those with subjective fatigue (more akin to “acedia”) from those with objective, physical, conditions. This would allow all patients, subjectively and/or objectively unwell, to be directed to appropriate treatment. For example: every MEcfs patient must choose whether to respond to symptoms with rest or exercise.'

    The last sentence is particularly concerning, an MEcfs patient shouldn't decide whether or not to respond to their symptoms with rest or exercise, they should receive medical advice, which, if they have been given an ME diagnosis, would be to avoid exercise as this will exacerbate their symptoms. If exercise improves them they don't have ME. The sentence could have been written by White or Wessely.

    I am also unclear as to the distinction between subjective and objective fatigue. If a patient tells their Dr they feel slightly tired, very tired or completely exhausted, how will such levels of fatigue be obejctively measured? I'm not sure what Mr Chapman's field of expertise is but I think that's rather a dangerous statement.

    It will be impossible for ME patients to make their own decisions about SEID, either it will be adopted by the medical authorities and they'll have no choice but to accept it or it won't. If it is not, no ME patient will be able to insist their Dr write SEID as it will be a non-existent condition, one could just as well insist they had FART or FUNK.

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  3. Thanks for your comments Simon. I've never been reviewed before. I am not physician and my views are my personal opinions. It is awful but I think far too few patients get a M.E diagnosis and the correct advice to rest. In the absence of clarity from medical profession, patients often do end up deciding their response to their condition. I agree that this is absolutely not as it should be.
    I hope that the confusion between M.E patients and patients with psychological fatigue can be resolved through the discovery of objective measures (Eg: V02Max appears promising). In addition the name "CFS" is now being challenged and this is the result of, not least I think, it being widely loathed within the patient community. Some authors of IOM report stated that patients with alternative name suggestions should now voice them.
    As to the occasional funk or fart, they appear to be a normal & unavoidable part of the human condition. :)

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