And because it's easy to blame the patient when it doesn't work, which in turn then makes it easy to withdraw financial support. Oh yes, and because it's easy to divert any blame away from everyone else.
Scientists trade insults over ME (JHP special issue)
- Thread starter Old Bones
- Start date
Starsister
Senior Member
- Messages
- 835
- Location
- US
.......Sorry, this is related to the posts and concept of us being lazy and not willing to apply ourselves so we need to be "taught" how to overcome our inherent desire to not do well. I obviously haven't figured out trick to posting my reply under appropriate post. SO, here it is: .Not to mention that most if not all of us would qualify as Type A personalities, and have always been driven to stay busy. When I was in 6 grade we were studying geography or something about cultures of the world, and one of the test questions was choose one of two: 1) around the world, most people work to live, or 2) most people live to work. Guess I had been daydreaming or hadn't read the material so I chose the answer that made sense to me personally..".people live to work ". Even though I grew up in a poor to lower middle class neighborhood, and was raised by two factory labor union organizers, I saw work as my reward for getting older!
Last edited:
Snowdrop
Rebel without a biscuit
- Messages
- 2,933
@MeganM
If you want to respond to another post you can click on the reply button and it will show up in the post window and you can put your response beneath it.
OR you can highlight a particular part of a post and a multiquote button will appear. You can click multiquote and then when you go to post your response first click on the multiquote button that appears when you've quoted something--it will show up as a quote in your post window.
If you want to respond to another post you can click on the reply button and it will show up in the post window and you can put your response beneath it.
OR you can highlight a particular part of a post and a multiquote button will appear. You can click multiquote and then when you go to post your response first click on the multiquote button that appears when you've quoted something--it will show up as a quote in your post window.
- Messages
- 20
Have been pondering the deconditioning theory in relation to my own ME, though perhaps, given it is so obviously false, this is rather a waste of time.
My ME, of some 25 years standing, has followed a relapsing and remitting course, varying from one period some 19 years ago when I thought I was recovered to the last two years when I have been largely bed bound. Relapses can be triggered by single episodes of over exertion, prolonged periods of 'doing too much', infections or have no obvious trigger. Relapses can have a sudden or a gradual onset. Each relapse in general is worse than the previous, takes longer to remit, less of the original premorbid functioning is regained and over time I develop new symptoms.
I have always been someone who pushed myself to do as much as possible. I always seek to do as much as possible whilst trying not always successfully to avoid PEM. This does mean that I have no spare capacity to deal with unplanned major events, such as deaths or 'divorce', that demand high levels of activity and consequently result in relapses. I have been historically resistant to pacing, and still struggle to suppress my natural tendency to do too much. I did several years ago undertake a very useful course of CBT aimed at getting me to be more realistic in what I attempt to do, to avoid unrealistic expectations of what I can do, even on good days. In effect CBT aimed at countering my false beliefs about how much I should be able to do and aimed at getting me doing less.
If my ME is the result of false cognitions and deconditioning, why do these fluctuate so dramatically? Why do I have a conscious desire to do more than my body is capable of doing? Why do I too often do too much? Why have my symptoms increased over the years? Why do my false cognitions and deconditioning result in what appear to be random new symptoms, unconnected with my initial episode of glandular fever? (Some of the more recent new symptoms, on average one new one each year, include caffeine intolerance, symptoms of prostrate problems - may when bad need to urinate every 15 minutes, chostochonditis and pain in the muscles of the shoulders and upper arms. I take new symptoms to my doctor so that for example prostate cancer or a heart condition were when relevant ruled out. These additional systems do not gain me extra attention or sympathy, as once a medical condition other than ME is excluded, they are consigned to the hours or days when I am alone with my condition and are not raised with my doctor or anyone else again.)
How can the psychosocial model begin to explain a relapsing and remitting condition? How does it explain the emergence of completely new symptoms unconnected with deconditioning? I would argue that deconditioning is not a significant factor in the course of my ME and that any false cognitions I have involve a failure to accept the implications/limitations of a long term disabling condition, diametrically the opposite of that proposed by PACE advocates.
My ME, of some 25 years standing, has followed a relapsing and remitting course, varying from one period some 19 years ago when I thought I was recovered to the last two years when I have been largely bed bound. Relapses can be triggered by single episodes of over exertion, prolonged periods of 'doing too much', infections or have no obvious trigger. Relapses can have a sudden or a gradual onset. Each relapse in general is worse than the previous, takes longer to remit, less of the original premorbid functioning is regained and over time I develop new symptoms.
I have always been someone who pushed myself to do as much as possible. I always seek to do as much as possible whilst trying not always successfully to avoid PEM. This does mean that I have no spare capacity to deal with unplanned major events, such as deaths or 'divorce', that demand high levels of activity and consequently result in relapses. I have been historically resistant to pacing, and still struggle to suppress my natural tendency to do too much. I did several years ago undertake a very useful course of CBT aimed at getting me to be more realistic in what I attempt to do, to avoid unrealistic expectations of what I can do, even on good days. In effect CBT aimed at countering my false beliefs about how much I should be able to do and aimed at getting me doing less.
If my ME is the result of false cognitions and deconditioning, why do these fluctuate so dramatically? Why do I have a conscious desire to do more than my body is capable of doing? Why do I too often do too much? Why have my symptoms increased over the years? Why do my false cognitions and deconditioning result in what appear to be random new symptoms, unconnected with my initial episode of glandular fever? (Some of the more recent new symptoms, on average one new one each year, include caffeine intolerance, symptoms of prostrate problems - may when bad need to urinate every 15 minutes, chostochonditis and pain in the muscles of the shoulders and upper arms. I take new symptoms to my doctor so that for example prostate cancer or a heart condition were when relevant ruled out. These additional systems do not gain me extra attention or sympathy, as once a medical condition other than ME is excluded, they are consigned to the hours or days when I am alone with my condition and are not raised with my doctor or anyone else again.)
How can the psychosocial model begin to explain a relapsing and remitting condition? How does it explain the emergence of completely new symptoms unconnected with deconditioning? I would argue that deconditioning is not a significant factor in the course of my ME and that any false cognitions I have involve a failure to accept the implications/limitations of a long term disabling condition, diametrically the opposite of that proposed by PACE advocates.
RogerBlack
Senior Member
- Messages
- 902
It doesn't even try to explain it.
Their model is solely based around fear-avoidance driven by normal exercise symptoms after deconditioning leading to more deconditioning, lack of sleep and panic disorder.
This is pretty much it.
At no point in the last 30 years have they actually investigated any aspect of this core hypothesis.
They have carefully avoided, ignored and sidelined any evidence and reasonable scientific procedure and pressed on.
For example, they have not paid attention to, or done any exercise physiology tests. Nor any actiometer tests. Nor any investigation of the course of PEM, ...
Starsister
Senior Member
- Messages
- 835
- Location
- US
- Thanks for sharing Peter. This thread has been enlightening for me to ponder as well. I've been a psychotherapist for 30 years, I was in my own psychotherapy for 10 yrs prior to that, and solidly 20 yrs after that, and then go now whenever I become away of something I want to work on to grow personally. None of my personal psychotherapy kept me from becoming ill. I was dealing with underlying childhood abuse, which helped me emotionally...I became a happier stronger person, but did nothing for my medical issues that slowly progressed. I devoted myself to a 12 step program for a number of years which did more for me in terms of realistic thinking, and giving me support and tools to live by, then did the psychotherapy. 12 step could be said to be a cognitive, behavioral program.
- I use cognitive behavioral therapy in my practice but incorporate it with understanding and healing underlying issues, so I believe there is a place for CBT in the world. But it is aimed at symptoms and behaviors. I use 12 Step to remind me when to let go, not try to take control of everything, not to work compulsively etc. This has helped with my management of energy so I can avoid flare ups of symptoms...although often flare ups come for no identifiable reason, so I've accepted living with the unknown.
- The psycho social approach that social work perspective embraces was an easy fit for me in grad school. A lot of our characteristics ARE learned or are with us as natural defense mechanisms. Defense mechanisms like working a lot can be good in some ways, not so good in others. The cause of my drive for achievement was clearly my attempt to prove to myself that I had value, but it might be different for someone else. We also are born with physiological predispositions of personality, obsessive, compulsive tendencies, depression, anxiety, and all the rest. I personally am not ashamed that I have always had problems with anxiety, and more recently depression due to grief and loss of family, and my health. Many characteristics that are deemed mental health issues have endogenous and exogenous origins. Sometimes it is more one than the other, sometimes at different times it can be both or just one.
- All that is to say is, I claim my own quirks, but will fight like heck to not have them used to dismiss my very real medical issues. Pain I realize can be subjective to a point...but when I work with mindfulness meditation n tapes to defocus from the pain, it come back fairly soon after ending the meditation. I have found it useful to temporarily break the pain cycle in my brain, and sometimes it can "reset" my system where I can get some extended relief. I get the same relief if anytime I turn out all the lights, curl up in a warm bed and concentrate on shutting my system down, as I get overstimulated easily and the stress hormones go wild. Some of us had enough trauma or stress early on in our lives to actually hard wire our systems for producing stress hormones. We can literally become addicted to stress.....untill we burn out like I did. Now I can't have a lengthy phone conversation with any kind of emotional content or my heart gets stuck in high gear, every muscle is tense, and my fever spikes way up, instead of the usual low grade.
- In my opinion, it takes all these kinds of perspectives to heal or at least have remission of some symptoms. I will never trust my life or my health to just one kind of medical perspective. I've not met a practitioner or perspective yet that doesn't have tunnel vision and think they have the one answer, even the so called holistic practioners usually have tunnel vision and can't see how their modality fits together with all the others. We each have to do that ourselves, knowing that we are our own best expert on us. So I don't put any energy into thinking about what the latest craze is in the medical community. I'm not familiar specifically with PACE, but I've been around the block enough times to know that each one of them were put together by someone (often trying to create a good sounding doctoral dissertation) who is trying to make a name for themselves and market a "product". I personally know them in the mental health field and the game applies to the medical community. They are all just phases, and someone will come along in a few years with some new buzz words they can copyright or patent, but it is all rehashing of the same ole ideas we've always known.
- And the only power these mis applied psychological theories the medical field is trying to co opt from the true mental health field, only has the power we are willing to give them. Just my 2 cents as someone who's been on both sides of the mental health system for many years, and knowing not all of my medical symptoms are going to be magically fixed by changing my attitude. I might need an attitude change some days, but I'm not going to let anyone else be in charge of it, and I certainly don't confide in MD or even DOs because they are trained to think only in their own little boxes and I don't trust what they would do with the information. I use them, not the other way around. I do want to acknowledge that those living on disability income are more at the mercy of "the system". Fortunately I've not been approved for that label yet, so they can't take anything away from me...and I will be eligible due to age for Medicare soon so it will be no ones business to monitor how compliant I am with some of their goofy recommendations!
Last edited:
The bold bit is definitely true for me. There is a ratchet effect with each relapse.
This is where the real malpractice lies with these researchers. They have never adequately tested the underlying assumptions in their basic claim, which should have been the first things they tested when they first proposed their hypothesis. But they didn't and have not done so to this day.
Either they are incompetent, or they are deliberating avoiding proper testing.
Woolie
Senior Member
- Messages
- 3,263
Me too.
The explanation that they would give for relapsing-remitting MECFS is that our fears and obsessions return after a minor infection or other "normal" illness, and we repeat the pattern all over again.
The whole theoretical account is pretty impervious to disconfirming evidence. Its designed to be unfalisifable.
lansbergen
Senior Member
- Messages
- 2,512
The first ten years I became worse with evey flair. After I started taking the immunemodulator I got a bit better after a flare. It was very slow improvement with tiny steps and now I am much better than I was.
Cheshire
Senior Member
- Messages
- 1,129
I really feel ill at ease with the way Coyne is handling the whole thing...
Far too agressive, often towards the wrong persons.
BurnA
Senior Member
- Messages
- 2,087
He is a loose canon.
adreno
PR activist
- Messages
- 4,841
Agreed. However I suppose he makes an ass of himself mostly, as opposed to anyone else.
Sadly, it's guilt by association. If he abuses a journalist who writes a reasonably balanced article on ME then all that happens is that journalist (and their colleagues) make a mental note that writing about ME leads to abuse - which plays right in to the idea that anybody questioning PACE is mentally unhinged.
adreno
PR activist
- Messages
- 4,841
I am not sure about that. I think he has made himself known as an ass, regardless of what case he writes about. I think he is infamous in his own right. And it seems that is how he likes it.
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
I doubt that Whipple is likely to be upset by Coyne and I think Coyne is entitled to be up front. As far as I can see Whipple has quoted some abusive remarks from Coyne without checking with Coyne about the context. That seems to mean that Coyne did not leak the remarks. Whipple says Davey Smith did not leak the remarks. So who did? Whipple seems to be making this exactly cloak and dagger. And what does he mean by just a routine article and nothing cloak and dagger. Is quoting abusive remarks just a routine article? Isn't the source of the remarks going to be uppermost in readers' minds?
It seems to me that the two of them are just baiting each other because they both enjoy it. And it is good publicity. Moreover, I suspect that it will make onlookers associate the ME debate with serious academic disagreement rather than whinging patients. Whipple is not going to be put off. I don't think other journalists who are genuinely interested in the underlying debate are likely to be put off. The touchy feely brigade are not any help anyway. The ones who want to dig deeper are I think getting intrigued.
Tally
Senior Member
- Messages
- 367
This in no way excuses what Coyne is doing, but was it really reasonably balanced?
"This has formed the basis of treatment of the condition, also known as myalgic encephalomyelitis (ME), in Britain, but provoked a backlash among some sufferers who feared that it implied the illness had a psychological rather than physiological origin."
"The Pace trial has come in for patient criticism so sustained that its original researchers, one of whom she knew, complained of harassment."
5 minutes of Googling was enough to find out it was patients, not researchers, who had spent countless hours analying PACE, and that issue was with the trial itself and not with patients being offended by psychological label, and that Tribunal concluded there was no harassment. Wouldn't those be included in the reasonably balanced article, instead of just copy-pasting what PACE authors say about us?
Or are we just supposed to be grateful with any article that doesn't paint us as potential murderers (I'm not making this one up).
Tally
Senior Member
- Messages
- 367
I think we forget that controversy sells. When something like this happens, journalists will more likely see dollar (or euros, or yen, or whatever
) signs in front of their eyes than be offended.
Cheshire
Senior Member
- Messages
- 1,129
According to this tweet, a lot of people could have:
That's part of what I don't like, the real issue (ie patients lives destroyed because of the BPS model) is completely burried.
The problem being that lots of people don't give many academic credit to Coyne, because of his agressiveness towards nearly anybody (including really wrong targets).
I'm all for harsh questioning, but it can be done without insults.
I really hope you're right.
lansbergen
Senior Member
- Messages
- 2,512
levamisole
trishrhymes
Senior Member
- Messages
- 2,158
I'm confused - I've just googled this and it comes up as a worming agent to treat parasites in fish????