Shit. From outside we can’t know for sure if the numbers referred are the only reason for stopping the patient from getting the necessary help he or she might be entitled to, but have no reason to believe anything else. This perfectly illustrates the importance of accurate information in an official national document (a “primer”). It is astonishing to state that 54-94% recover based on this, ref. Joyce, Hotopf M, Wessley S. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. QJM: monthly journal of the Association of Physicians. 1997 Mar:90(3):223-33. PubMed PMID: 9093600. Information in official documents certainly ought to be as correct as possible on all areas of life, but it highlights the importance of medical documents. And it is specifically important to get it as right as possible and/or be cautious, where doctors have little knowledge and interest, speaking very general here. But if they don’t know what to do or think, sort of gets paralyzed and letting go of clinical judgment and experience, there is trouble when relying solely on a official source, when you at least know or should know that there is lots of uncertainty. It might be an easy way out for the doctor, but what if the data and information is poor? Many patients are well aware that poorly documented recovery numbers, randomly thrown around on a group level, causes all sorts of problems. Still some negligently use them and cause a lot of harm. By the end of May 2019, the national (in)competence center gives reference to the FITNET-study as a single study they can rely on when it comes to prognosis. How reassuring? And then a little applause when stating that “the studies mentioned in the primer are few and of poor quality. They got that right, but nevertheless they are now focusing on a single study - Fitnet. What about stating clearly that “From what we know by May 2019, we have no data that justifies to express recovery rates in numbers”. And the last sentence of the leader of the center is quite fantastic! That one is hilariously worrying and really sums up the total incompetence of these people. Which again brings another important question, that of what is recovering in these people’s mind and eyes?
It’s quoted and translated above as; Otherwise our own clinical experience show that most recover, but this can in no way be quantified. Then the discussion of “quantified”, “put a number on”, “measuring” and so on. So she says that most patients recover, but they have absolutely no meaningful way of measuring it, can’t be estimated at all? But still they keep saying over and over again that most children/adolescents recover? It’s a mess. What we do know for sure, is that recovered has a wide range of meanings. Quite often when looking in detail into such anecdotes, recover doesn’t mean that at all. People who barely function a fraction more after labeling themselves as recovered from the disease, well do they actually recover? You could use “recover” as some kind of positive language to yourself maybe, but measured objectively, it’s not recovering in the real sense of the term. Recovery would mean restoring health fully or very close to health as prior to the disease. Agree with Andy that recovering would mean something like this. “I could very easily put a number on (or measure) what recovery would mean for me, i.e. number of hours worked without symptoms, number of mins exercised without symptoms, distance walked without symptoms etc etc.”
you'd think so, but it looks like, generally speaking for ME/CFS patients, the version that is used is the one used for Mental Illness (which is quite different) see https://www.s4me.info/threads/more-pace-trial-data-released.9401/page-8#post-168768
Yes, unfortunately nothing means what it used to. Words are bent and losing they’re intended meaning in the name of oversimplification. The recovery model is a gigantic piece of crap. Patient X used to play tennis on a regular basis for 2 hours hard, feeling good, getting all the health benefits. Now patient X is barely able to watch tennis on tv for an hour, not getting any health benefits, getting more ill pushing through for much to long cause of no sound medical advice. But hey, patient X is recovered cause he have some sort of control? Is control what it’s all about? And does patient X have any control, when accepting that the body that used to be strong and fit does not work at all, but X can, if lucky, watch tennis on tv. Having control and resilience, which most ME-patients by time will have a tenfold, is not about recovery! “Recovery is a journey rather than a destination” ! Ha! Again: having control and resilience, which most of us have, is not about recovery. Bullshit.
@Peter Thanks for the response. It probably seemed obvious but I have such a short memory sometimes I loose track of things in a thread and need the extra help. I agree with your points. Healthy people often have an odd sense of what constitutes (fill in any number of concepts to do with ill health) an appropriate conceptual model. They need to curtail the arrogance and have some respect for the ill persons experience and knowledge of their own condition and what things like Recovery might mean to them.
This is pretty relevant to the recent study about spin in psychological and psychiatric research. Using a different definition of "recovery" is completely arbitrary and one of the main ways nonsensical research somehow leads to positive results. Recovery should be free of illness and any limitation, full stop. Anything else is remission at best. Hopefully reason eventually prevails but I fear too many people are used to just phone it in, produce nothing of value and get participation trophies for it and have little interest in changing playing on easy mode.
The Norwegian ME Association released a 20 minute YouTube video today with a conversation between two health care workers talking about young ME sufferers. It's professor and paediatric neurologist Kristian Sommerfelt interviewing psychologist Ketil Jacobsen. They've both worked with young ME sufferers for many years, and they speak of their patients with such empathy and respect. I don't know if there are plans of making English subtitles, but here's a summary at least: Kristian Sommerfelt is meeting Ketil Jakobsen in a Children and Adolescent's psychiatric outpatient clinic where Jakobsen is working. Sommerfelt asks why they take in patients with CFS/ME, which in his view is a somatic disease. Jakobsen answers that it's known that help for this group is often lacking, and knowledge is low, So they've decided to provide an offer, even though it's not classified as a psychological illness. He thinks it's quite natural to do so. They have patients with other chronic conditions that are not psychological. They can't treat those conditions, but have a lot of knowledge on making adaptions for them, for a better quality of life and to prevent development of secondary psychological illness. Their starting point is that this is a serious disease which can be difficult to cope with. The children and adolescents who develop this are often left to themselves. There's quite a lot of powerlessness in the health care system, so there should be an offer for them. Sommerfelt asks what kind of approach Jakobsen has to these patients. He says his approach is based on simple psychological principles. He draws a person with a backpack. The backpack represents CFS/ME. A big, heavy backpack to carry, with all the bodily symptoms. Then he draws another backpack on top of it, and says some gets an extra backpack with different kinds of worries and losses. There's the feeling of grief and despair, mostly over not being able to do what they used to be able to. For some this backpack can be very large. He draws another backpack on top of the other two. This represents behaviour. When you have been ill for a long time, you can develop a behaviour that's not helpful. Like not adjusting activity levels to the disease. He tells his patients that unfortunately there's nothing he can do with the first backpack, the one that represents ME, but that together they can work with the other two. Sometimes there isn't a lot work to do. The patient is managing fine and they end the therapy. In these cases it can be a relief for the parents to learn that there are no additional issues, but it can be hard for health care personell not being able to help. He's met devastated patients who has been pushed into treatments they don't feel are of any use. Jakobsen thinks this is something health care workers must respect. Sommerfelt says there are many who believe and hope that by working with the additional backpacks, one can affect the backpack representing CFS/ME, for instance with CBT and asks Jakobsen for his opinion. Jakobsen says that this was his belief when he started working in this field. But eventually by experience he learned that it's not correct. As for now, it''s not possible to predict who will improve and who will deteriorate based on how they are dealing with being ill. But if you look at it the other way around, then bad adjustments, depression, anxiety, isolation, might in some cases contribute to deterioration. Sommerfelt suggests that Jakobsen's change and development in how he looks at CFS/ME is connected to learning and listening to the patients, which Jakobsen fully agrees with. Jakobsen says that's the reason things often go wrong between patient and health care personell. There are three conditions he's given some thought. One thing is when the adolescent's experiences are overlooked. When they are saying that for instance that an activity plan didn't work well, the health care provider responds: don't worry, just keep trying. This is a bad way to meet these patients. The same with talking about symptoms. Some patients have told him that they were never allowed to talk about their symptoms and what was happening in their bodies. ME comes with a massive amount of symptoms, and they're met with: all tests are normal, there's nothing to worry about. It leads them to losing faith in those who are actually there to help. The third aspect is blame. For instance when a doctor has had several consultations, and no plan, physiotherapy treatments etc have worked, and the tests are still coming back normal, the doctor might say that it's the patient who hasn't made enough effort. If there in addition is a worried parent with the patient, it's not unusual to suspect that it's the parents who somehow sustains the behaviour. He's heard many stories about blaming the patient or the families for the illness or lack of progress. So put together, not being heard regarding symptoms, not being heard regarding one's experiences and in addition being blamed for not improving, it leads to losing your patient. They won't return. Unfortunately quite a few have these meetings, but it's often about the health care provider's powerlessness. It's much better to make the starting point in what the patient feels and experiences, and work from there. He's clear about saying that this disease is real and what the patient is experiencing is real. We don't know very much about this disease, but I will try to help you coping with it. Sommerfelt asks Jakobsen of his opinions regarding certain personality types and ME. According to Jakobsen's experience, he sees no connections. He's met with all kinds of personality types and socio-economical backgrounds. In his view this is a disease that strikes completely at random. Sommerfelt talks about meeting an eleven year old girl with severe ME. She could only talk for a few minutes at the time. But when he talked with her, her eyes were full of light, happy for the social interaction, easy to talk to, it was extraordinary, and he's had similar experiences with others as well. He asks Jakobsen about his experience regarding the psychological health in the adolescents he's seen. Jakobsen says he recognises what Sommerfelt describes. He's astonished of how good they are at coping with such a massive disease which is very dramatic for the patients and their families. They can get frustrated, but it's seldom he sees that they develop depression or other psychological illnesses. Even after having been bed bound for years, lost their friends, put aside their dreams and aspirations. He's in admiration of many of them and how they are managing to cope. https://www.youtube.com/watch?v=7mTsWpaRolI
Moderator note: This post has been copied to this thread, where there may be further discussion of it. https://www.s4me.info/threads/trial...lly-bankrupt-actions.10988/page-3#post-200086 I have today sent a letter to Dr Godlee of BMJ about the Lightning Process. The content is given below. Dear Fiona, I note the recent publication in BMJ of an account of the finalised Risk of Bias 2 tool (RoB2) used in the context of the GRADE system used by Cochrane and NICE for assessing quality of clinical trial evidence. The document focuses on reducing the stringency of RoB assessment principally in unblinded trials. My immediate reaction to this was that it is a retrograde step, since, increasingly, unblinded trials appear to be given more credence than they deserve. My immediate reaction was then followed by a more serious concern when it was brought to my notice that the corresponding author, Jonathan Sterne from Bristol, is also an author on the paper reporting on the SMILE trial of the Lightning Process that has been the topic of previous correspondence and is now again. Amongst the proposals for increasing leniency when considering bias in trials, the RoB2 document re-assesses the impact of changing outcome measures after trial initiation but before data analysis and also makes reference to problems with bias due to beliefs held by the patient or treatment delivery team when outcome measures are subjective. It will have not have escaped your notice that amongst the many flaws in the SMILE trial are the issues of outcome switching midstream and the problem of severe risk of expectation bias relating to subjective outcome measures. So I find myself writing to you again to support the request from David Tuller, and now fifty or more other colleagues, to take the problems with the SMILE trial seriously. I think I had previously suggested that a retraction or clear indication of the flaws of the trial was needed. Looking at the revised manuscript I cannot see that anyone would consider the problem adequately addressed since the inappropriate conclusion remains the same. Things are beginning to look surreal. It is almost as if the SMILE trial was an exercise in demonstrating that scrutiny by GRADE and RoB systems can be circumvented with impunity. The GRADE system starts from the premise that a randomised trial provides high quality evidence unless it suffers from one or more defects including bias. The weakness of this can be illustrated by proposing a trial in which patients are randomised to being taught that they will only get better if they think and say they feel better, whether they do or not, or to being told to say how they really feel, and then using how the patient says they feel as outcome. One might think such a trial would be absurd, and never proposed. Yet this appears to be more or less what the SMILE trial is. It is pretty much how patients describe their experience. On the other hand, as Dr Oltra points out, we are not told what really went on, and it looks as if according to RoB2 the risk of bias is not scored high if we do not know what went on! RoB2 does mention the possibility that bias might arise from patient or therapist beliefs but gives as examples the rather extreme cases of a physiotherapist assessing the benefit of her own treatment or a patient having a belief in homeopathy. There appears to be no recognition of the fact that expectation bias due to beliefs about the value of any sort of treatment are ubiquitous in trials (and in any scientific experiment, including work in the lab) and are the basic reason why we blind ourselves to test and control. In ME/CFS we have seen dramatic responses due to expectation bias with conventional drugs with no therapeutic effect, including rituximab and anti-virals. The RoB2 analysis appears either very naïve or disingenuous. As we are all aware, the SMILE trial had a highly unsatisfactory structure, being initiated as a ‘feasibility study’, with a large number of patients recruited, and then being registered as a ‘formal study’ after switching of outcomes in the knowledge of the progress of the first 50 or so patients. This might fall under Dr Sterne’s allowed situation of before data analysis but it is a classic cherry picking scenario. ‘Feasibility trials’ and ‘pragmatic trials’ appear to be increasingly popular. As far as I can see these techniques are designed to make trials look as if they have a valid structure for gathering reliable evidence when they almost certainly do not. I have a strong impression that ‘methodological experts’ associated with clinical trials units and other related departments may have a conflict of interest in terms of co-authorship on publications of poor quality trials. I had for some time thought that the problems of poor quality trials in ME/CFS were at the periphery of academic medicine. Now I get the strong feeling that they may be typical of a general process of degrading the quality of clinical science in the UK. We appear to be moving towards acceptance of methodology that for decades we have known yields meaningless results. I get the impression that bodies like Cochrane and the BMJ are sleepwalking into a situation where they rubber stamp commercial ventures of no merit. In this wider context I can only emphasise the view of all those copied above, that the SMILE trial paper should be retracted and that a fully independent investigation should be completed as soon as possible. Yours sincerely, Jo Edwards
Posts relating to Nina E. Steinkopf's blogpost "A Messiah in the Norwegian health system?" have been moved to a new thread.
A moving article from the Swedish newspaper Aftonbladet about 26 year old Sandra who suffers from ME. The article contains a 7 minute interview with her and Mats Lindström, leader of an association for infectious diseases which are challenging to diagnose. Despite having been diagnosed, Sandra is basically left to herself with no help from the health care system. Aftonbladet: Sandra, 26, är svårt sjuk men får vänta många år på hjälp Sorry, not able to google translate the article..
A letter to the Norwegian newspaper(?) Firda. Google Translate gives the title of the letter as "It is the serious sick who are lying, not the healthy ones" but given the rest of the letter I'm assuming that is a poor translation. Original Norwegian, https://www.firda.no/synspunkt/hels...-sjuke-som-lir-ikkje-dei-friske/o/5-15-872948 Google Translate website doesn't work with the above URL but the translate option built into Google Chrome does.
A better translation of the headline would be "It's those who are severely ill who suffer, not the healthy ones"
Very sad and distressing news from Finland: Helsinki's University hospital has opened a "functional disorder" clinic for ME-patients. A working group at the hospital have decided to disregard all biomedical research and implement the "Danish model" in Finland (so bizarre, as Denmark is finally moving away from the so called "Danish model"). When asked what materials the clinic will offer its patients, one was Per Finks manual "When the body says stop", funded by Trygfonden.
So annoying, frustrating and sad. It's been posted on UK ME Action page too. When Braglee clinic in Sweden seems to be reverting to BPS it is a bit concerning . Perhaps @dave30th ' s input is needed.
Yes, the decision to allow Gunnar Olsson to conduct his ACT study on ME-patients from Bragee, among other things, is disconcerting to say the least. It's a very ambigious picture Bragee clinic, but mostly Bragee himself, paints of where they stand in regards to the etiology of ME. Personally, I don't find Bragee to be very trustworthy. He is also something of a loose cannon, and makes statements like: "...all ME-patients are at least mildly depressed, even if they won't admit it...". (From the educational day at Bragee this spring, which was filmed by public tv, to be aired as 'education'). His personal opinion, sure, but easily mistaken for facts in that context, and potentially very damaging to the community. Not to mention what it says about how he views ME-patients. I know @mango has written a lot about Bragee, so I might be repeating some of what she has already said. Sorry if that's the case. I recently learned that Bragee clinic (or at least some of its personnel) are telling patients that PEM and symptoms are caused by an abnormal stress response and that the body's "threat-defense" (kroppens hotförsvar) is overactive. That overexertion in any form, or overstimulation, causes a stress on the body that elicits PEM. Essentially that stress is the main culprit, not the depletion of energy or going beyond our energy boundaries. While some individuals appear to have found this concept useful for managing the disease, I am deeply concerned that one of our ME-clinics are conveying as facts, something that is proven not to be true. Also, isn't abnormal stress response etc the BPS- 'flavor of the year'? The other ME-clinic, Stora Sköndal, doesn't use any of those terms or concepts to describe PEM and pacing, so why do Bragee feel the need to? It also concerns and baffles me that many ME-patients in the Swedish ME-community don't seem to regard this as a problem. The reasoning seems to be: " it resonates with me and I find it helpful on a personal level, so I don't see a problem". Even if it is pointed out that the underlying casuality model is erroneous and the reason stress can exacerbate symptoms is because it drains energy, they don't see a problem. Surely they should see it as a problem that one of our ME-clinics is spreading facts to the patients that are not just unproven, but have been scientifically refuted! I guess people have been so starved of appropriate care, or any care at all, that if they finally do recieve it, they can't bother with seeing the bigger picture. Or, a more worrying scenario, that the new BPS-lingo is being adopted and accepted by ME-patients. As one person said: "It feels like that is what's happening in my body". On another, discouraging note: An ME-clinic was about to be established in Umeå, the largest city in northern Sweden, but the project has now been cancelled due to cutbacks. The two clinics in Stockholm (Bragee and Sköndal) that have a contract with SLL (Stockholms läns landsting), the regional health authority in Stockholm, have been following a new contract for a while (negotiated mainly because Bragee pushed hard for it). The new contract means less resources are allocated to treating patients, especially patients from outside the region. Many regions have also implemented a policy that means GPs aren't allowed to make referals to specialist ME care outside the region. Stora Sköndals waitinglists are getting increasingly longer. People have to wait 2-3 years now, after an accepted referal. Though not nearly as bad as the situation in Finland, Denmark, Germany and many other European countries, the progress being made in Sweden during the last couple of years unfortunately is accompanied by several backslides. Edit: spelling
