I totally agree! There is no bias against the psychological perspective. I would for an example rather get cured from ME with LP or CBT than Cyclophosphamide. Whatever works, sign me up! But we know LP do not work and could harm!
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Lightning Process study in Norway - Given Ethics Approval February 2022
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I totally agree! There is no bias against the psychological perspective. I would for an example rather get cured from ME with LP or CBT than Cyclophosphamide. Whatever works, sign me up! But we know LP do not work and could harm!
Esther12
Senior Member (Voting Rights)
But the assumptions that lead to them claiming CBT/GET are effective are different to the assumptions of the underlying models. Back in 2010 I pulled this quote out from biopsychosocial researchers who were still promoting GET:
The link now seems down, but this was reference 27: Van Houdenhove B, Verheyen L, Pardaens K, et al: Decreased motor performance in patients with chronic fatigue syndrome: should we treat low effort capacity or reduced effort tolerance? Clin Rehabil 2007; 21:1121–1142[Abstract/Free Full Text]
Those promoting CBT and GET often (always?) don't think that the models underlying CBT and GET are accurate descriptions of CFS.
I think that the point there is more that the low standards applied to CBT/GET trials would not be seen as acceptable for pharmaceutical trials.
I don't think that criticising people for doing virology studies just because other virology studies were rubbish would be that strong an argument either. The problems with the studies should be criticised, and the researchers doing poor work should be criticised (and hopefully not receive further funding), but maybe some future virology study would be useful? It's very difficult to prove a negative, so who knows what might be revealed in the future?
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Hoopoe
Senior Member (Voting Rights)
I don't think researchers should be allowed to say whatever they want about patients while being protected by academic freedom. It is incredibly toxic and damaging to send the message out that patients create their own illness. It is inexcusable to do this when there's no evidence this is actually occurring. Who protects patients against harmful prejudices by researchers?
You seem to be misunderstanding. I did not mean "other virology studies", I meant studies that make the same general assumption. For example the assumption of gamma herpesvirus infection playing a role in ME/CFS. After 10 flawed clinical trials of medications targeting these viruses you really would have to question whether this topic of infection deserves more study (when the presence of these viruses was just assumed, never actually shown). It would be obvious that this is an incorrect hypothesis and people would be right to point out how absurd it is to continue to try and make this idea work. I suspect you would see a lot of patients rolling their eyes and being frustrated with yet another worthless virus study if one were announced. That is similar to the situation we have with psychotherapy for ME/CFS. It would be completely okay to criticize such a study for being based on the same old ideas that have never led to results that look like they would hold up in a properly designed study. Of course it's easier to criticize the methodology but it would not be honest to say that people aren't also frustrated with the fact that this is more of the same old misguided idea.
You seem to be misunderstanding. I did not mean "other virology studies", I meant studies that make the same general assumption. For example the assumption of gamma herpesvirus infection playing a role in ME/CFS. After 10 flawed clinical trials of medications targeting these viruses you really would have to question whether this topic of infection deserves more study (when the presence of these viruses was just assumed, never actually shown). It would be obvious that this is an incorrect hypothesis and people would be right to point out how absurd it is to continue to try and make this idea work. I suspect you would see a lot of patients rolling their eyes and being frustrated with yet another worthless virus study if one were announced. That is similar to the situation we have with psychotherapy for ME/CFS. It would be completely okay to criticize such a study for being based on the same old ideas that have never led to results that look like they would hold up in a properly designed study. Of course it's easier to criticize the methodology but it would not be honest to say that people aren't also frustrated with the fact that this is more of the same old misguided idea.
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Esther12
Senior Member (Voting Rights)
I think that in order to try to protect patients we should be criticising researchers making misleading claims, and we need to do so in a very careful manner, particularly given some of the ways that they try to attack and dismiss us. It's clearly not enough, and a lot of patients are going to go on being harmed, but I think that it's the best we can do.
Esther12
Senior Member (Voting Rights)
I have to admit that I probably am misunderstand your point here. I certainly think it would be fair to criticise the researchers who kept running rubbish studies, and to argue that they should not be given more funding. But again, I think that it would be best to criticise the studies for the way they were run, rather than because they assumed a particular infection played a role in ME/CFS when that had not yet been shown to be true. It is difficult to imagine this parallel because I think standards are routinely higher in virology. We were really unlucky XMRV was such a mess, but it still got sorted out relatively quickly.
Hoopoe
Senior Member (Voting Rights)
Another aspect is this:
There are patients that are too sick to care for themselves and dependent on family which also abuses them verbally because they are frustrated and find it difficult to believe in an illness without an objective test and a doctor's reassurance that this is real. Sending out the message that patients suffer from false illness beliefs and aren't really sick (or like LP, can choose to be well and be cured in 3 days) is like pouring gasoline on a fire in these situations.
The prejudice that these patients face from family members is pretty much the same as that of the CBT/GET model. Patients need to do more, aren't as sick as they believe, need to overcome themselves, and so on. That's because the CBT/GET model is the common prejudice, just worded with more sophistication.
There are patients that are too sick to care for themselves and dependent on family which also abuses them verbally because they are frustrated and find it difficult to believe in an illness without an objective test and a doctor's reassurance that this is real. Sending out the message that patients suffer from false illness beliefs and aren't really sick (or like LP, can choose to be well and be cured in 3 days) is like pouring gasoline on a fire in these situations.
The prejudice that these patients face from family members is pretty much the same as that of the CBT/GET model. Patients need to do more, aren't as sick as they believe, need to overcome themselves, and so on. That's because the CBT/GET model is the common prejudice, just worded with more sophistication.
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Peter
Senior Member (Voting Rights)
It is hard to know where to start reading this masterpiece of shit. But one comment when it comes to Andresen and GET. Glad it helped her.
Wouldn’t it just be wonderful if every patient could train themselves back to health. Easy, safe and at almost no cost. Hard to think of anything better than that. But unfortunately that is not the case for every patient put into ME/CFS. Many of them have lived above what some people might consider a deconditioning level. In many cases barely above, but still. Prior to disease they’ve been fit like many other patients groups, and they also know the benefits and joy of training, just like other patient groups do. There are a lot to miss when ME, hard to rank, but many would put training/movement at the very top. Not taking such facts for what it is and respecting it, messing endlessly for GET for every patient is just insane. And that is what these people do.
Wouldn’t it just be wonderful if every patient could train themselves back to health. Easy, safe and at almost no cost. Hard to think of anything better than that. But unfortunately that is not the case for every patient put into ME/CFS. Many of them have lived above what some people might consider a deconditioning level. In many cases barely above, but still. Prior to disease they’ve been fit like many other patients groups, and they also know the benefits and joy of training, just like other patient groups do. There are a lot to miss when ME, hard to rank, but many would put training/movement at the very top. Not taking such facts for what it is and respecting it, messing endlessly for GET for every patient is just insane. And that is what these people do.
benji
Senior Member (Voting Rights)
The recovery rate isn’t that impressive, no.
I use 50 stories from recovery, to be nice and be on the safe side,
And 5000 Norwegian that has taken LP. There are different numbers of that too, but 5000 seems safe. That means 1% recovery rate.
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Jonathan Edwards
Senior Member (Voting Rights)
Agreed but that is not because they are psychological rather than physical -whatever that is supposed to mean. It is because they are incoherent, largely untestable, and where testing is possible shown to be wrong. My statement was true - it was a statement about my viewpoint - which is that the distinction between psychological and physical is irrelevant, partly because nobody knows what they mean by psychological and partly because it must be physical anyway to be testable by clinical science.
Simbindi
Senior Member (Voting Rights)
I think it is important to state that the psychological theories underlying treatments such as CBT, GET, do not fit the patients' experiences of their illness (which is much more than 'chronic fatigue') or their mental states. That the way that most patients physically responded when they developed the symptoms of M.E. involved active behaviours that would not have led to them to becoming deconditioned (etc, etc). This is why I am concerned about research that is based on an hypothesis that implies/assumes/falsely asserts I behaved in a way that I absolutely did not, in fact the exact opposite!
Moderator note: A quote from a deleted post has been removed. It referred to confusion between the SMILE trial and the school absence study.
well, mixed up a bit, yes, but there was something in what you remembered!
In SMILE, the primary outcome in the feasibility trial was school attendance at six months--both self-reported and vetted by school records. Physical function on SF-36 was a secondary outcome. In the full trial, school attendance at six months was demoted to a secondary outcome and physical function was the primary. There were positive results for physical function and null results for self-reported school attendance at six months (they never bothered to vet it against school records). But the positive results for the new subjective primary outcome of physical function allowed Crawley to portray it as a success.
well, mixed up a bit, yes, but there was something in what you remembered!
In SMILE, the primary outcome in the feasibility trial was school attendance at six months--both self-reported and vetted by school records. Physical function on SF-36 was a secondary outcome. In the full trial, school attendance at six months was demoted to a secondary outcome and physical function was the primary. There were positive results for physical function and null results for self-reported school attendance at six months (they never bothered to vet it against school records). But the positive results for the new subjective primary outcome of physical function allowed Crawley to portray it as a success.
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I’ve done them all Lightning process, mickel therapy, reverse therapy, body mind clinic etc I kind of think me/cfs is a serious illness and we don’t know what it is, but you can almost trick your body into thinking it isn’t I’ll by turning off the stress response, the second you relapse from that which all people do then the illness will always come back, that’s why it’s easy to blame the patient, it’s impossible to keep it up 24/7, the feeling you get when you turn off the stress response tbh does feel like a cure, I’m not sure how to expand on this but they seem to say the hypothalamus or how axis is overactive so I best way I could try to describe it is the hpa axis stops or slows down when the stress response is switched off
Most of the therapies turned my stress responses off for a very short time but usually the next day I’d feel no different, sometimes I’d feel even more stressed because it would bring up emotions and I wouldn’t know how to deal with them and tbh there’s not much help from any of the dozen or so me/cfs therapists when it’s comes to actually dealing with emotions, usually it’s just a flash card or something like a body movement or step, it’s kind of cruel that if you have cfs you don’t deal with emotions the traditional way, you have to have like a flash card or some gimmick, also if you clash with the therapist and that’s a strong possibility you’ll feel uneasy anyway and more stressed
Long term I don’t belive they’re successful for anyone, I think a lot of the testimonials will be done when the patient is still in the clinic so they’re either being polite or they feel good temporarily, or perhaps they’ve trained in the therapy and can make money out of it, that’s my take on it, I am expert, I’ve done pretty much every single cfs therapy
Most of the therapies turned my stress responses off for a very short time but usually the next day I’d feel no different, sometimes I’d feel even more stressed because it would bring up emotions and I wouldn’t know how to deal with them and tbh there’s not much help from any of the dozen or so me/cfs therapists when it’s comes to actually dealing with emotions, usually it’s just a flash card or something like a body movement or step, it’s kind of cruel that if you have cfs you don’t deal with emotions the traditional way, you have to have like a flash card or some gimmick, also if you clash with the therapist and that’s a strong possibility you’ll feel uneasy anyway and more stressed
Long term I don’t belive they’re successful for anyone, I think a lot of the testimonials will be done when the patient is still in the clinic so they’re either being polite or they feel good temporarily, or perhaps they’ve trained in the therapy and can make money out of it, that’s my take on it, I am expert, I’ve done pretty much every single cfs therapy
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rvallee
Senior Member (Voting Rights)
It's only one person's perspective but I am generally speaking a stoic, stress response is not really part of my behavior. I have kept perfectly normal conversations going while smashing the brakes to avoid a close automobile collision. Twice. It's not a skill or anything, I am just generally calm under all circumstances and pretty much worry-free. Having lived a comfortable life definitely plays a role in this. I could not even name a traumatic event in my life, nothing even comes close to that level and I'm not even talking from the perspective of a stoic but in absolute terms. So no trauma either.
Having said that, I can say with certainty that being more or less impervious to stress and having lived a great, sheltered comfortable life makes exactly zero difference about ME, about symptoms and progression. I have tried my damndest to ignore the illness, to push through, to continue my life, great at the time I got ill, and pursue my goals. Also makes zero difference. This disease is a purely physiological process or set or processes and adding psychological influence to it is entirely superfluous.
It would be great if this worked. But if it did I would never have gotten ill with ME in the first place. It is simply an invalid proposition. There's a lot in the LP about building a new better life. I would be very content with warping through time back to the life I had when I got sick. It was great, I would take it back without a second's thought. Satisfaction with life is entirely irrelevant to ME, I was living a life that is as close as possible to being fulfilled, including self-actualization or whatever higher achievements one can ascribe to a life worth living.
All of this stuff about stress and anxiety and life satisfaction or whatever is superficial nonsense. It has exactly zero influence on the illness itself.
I think I mostly agree with you, out of curiosity, let’s say I was the therapist and you were in my situation, the questions id be asking would be stuff like okay your life was great or very good but I suppose the therapist would be looking to find some stressor, for example you may have had a great life but were you challenging yourself and reaching your goals? Where you isolating yourself in anyway? Were any negative people draining g your energy? Was anyone treating you badly and perhaps one of the above was happening and you had a blind spot to it?
I’m guessing no but that’s how the therapies seem to work, I’m not standing up for them btw, I’ve wasted about 10k on therapy so I’m not trying to trip you up, just trying to keep the conversation going I suppose
Marky
Senior Member (Voting Rights)
well, mixed up a bit, yes, but there was something in what you remembered!
Thanks for the background Tuller. Ill ask u about this, since I didn't understand something the biased journalist said. When I told her that SMILE did not get any effect on its objective outcome (school attendance), she said that was not correct because something about school being closed in England. I assumed it was nonsense, but didn't know where to look for that info. If they did not actually get any effect on the self reported school attendance, it seems she was not being very honest, which is no surprise.
Esther12
Senior Member (Voting Rights)
Do you have any record of what they said to you?
Marky
Senior Member (Voting Rights)
The interview was over the phone (which i will never do again, because this journalist many times denied me editing my statement for clarity). E.g. she asked me where in the LP-pamplet it stood that u are supposed to ignore symptoms, but the pamplet is like 18 pages, and I when I could not find it at that precise time, I asked her if I could send it to her so that she could find it herself. She denied this request, and originally quoted me and made it look like it was something i made up.
The correspondence by mail was basically me demanding to be quoted correctly, and to have important points included, and also me trying to find out what the story would be about and who would be included. These requests was also denied, but I reckoned it was better to have the methodological criticism come to light as long as i knew what i was quoted on. I did not know who the journalist was originally, but after the interview I found out it was the biased journalist of whom i had criticized before. So i knew something was up.
Obviously when the article was published, it was an advertisement for LP essentially, and the headline was "ME-patients try to stop research", which is factually incorrect as i stated in my petition that the petition is a request for methodological changes to the research project on LP. Additionally it was only me that was behind it, not a "group" of angry activists or whatever. The journalist also denied to change these factual errors, and the headline lead to a lot of prejudice and nasty comment sections on social media.
When we talked about the SMILE-study, that was over the phone, unfortunately.
I am going to report the journalist to the Norwegian Press Complaints Commission. All her articles taken together just completely lacks objectivity, integrity, and are blatantly disregarding journalistic guidelines.
What the investigators claimed was that the school attendance wasn't a good primary outcome because they were told by students that there were some issues related to exams they are required to take that they can study for at home. So that the school attendance therefore didn't really correspond to how well they felt. Someone familiar with the UK educational system in high school can explain better. It's easy to make excuses for interventions that perform poorly.
Marky
Senior Member (Voting Rights)
Thanks! I mean if they still have to go to school for a fair amount of time outside of the exams, that should not be an issue? Sounds like an fishy excuse to me.
whether it was legitimate or not, the appropriate way to address it was not to swap outcomes and pretend they didn't. I think people in the UK educational system could answer better whether it makes sense or not. but the bottom line is they had null results. honest researchers take responsibility for their findings rather than trying to hide them.