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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Lipkin bad news folks
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urbantravels
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I guess I must have missed her original column from May, which she links to in this new column:
http://www.dailymail.co.uk/debate/a...ics-wrong-deny-existence-chronic-fatigue.html
http://www.dailymail.co.uk/debate/a...ics-wrong-deny-existence-chronic-fatigue.html
Purple
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These articles are by Sonia Poulton who has written about ME/CFS, in similar manner, after watching Voices from the Shadows in May.
She has a Twitter account: https://twitter.com/SoniaPoulton
She has a Twitter account: https://twitter.com/SoniaPoulton
taniaaust1
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wow what a great article. I hope that anyone who is feeling down for that other horrid biased one (esp its horrific heading) .. I hope you read this one.
I think I am in love
Seems so ironic to see this after the other blog entry on the same website.
Thanks - that was a good thing to wake up to this morning. I've left an appreciative comment.
She gives an approving reference to Angela Kennedy's book.
The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's 'Authors Of Our Own Misfortune?' which tackles the topic with some considerable aplomb.
Well done, Angela!
The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's 'Authors Of Our Own Misfortune?' which tackles the topic with some considerable aplomb.
Well done, Angela!
alex3619
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I was hoping Angela's book would arrive in the mail today. It didn't. Oh well, it will arrive sometime. Bye, Alex
There's a good piece on the results by Amy Dockser Marcus in the Wall Street Journal - despite it being good, the comments are quite disappointing, I think. I'm not up to registering today but if anyone wants to leave an appreciative comment that would be great:
http://online.wsj.com/article/SB100...YWORDS=AMY+DOCKSER+MARCUS#articleTabs=article
We want to make sure that when the next Lipkin study with its broader remit brings its results out, these journalists who are well-informed know it's worth writing a piece and we can help by visiting their blogs and leaving positive comments.
http://online.wsj.com/article/SB100...YWORDS=AMY+DOCKSER+MARCUS#articleTabs=article
We want to make sure that when the next Lipkin study with its broader remit brings its results out, these journalists who are well-informed know it's worth writing a piece and we can help by visiting their blogs and leaving positive comments.
It just occur to me something, I read somewhere about studies of putting ME patients in coma/deep sleep state and they were still sick after they woke up. Is this correct? So if we test the ME people while comatose and the inflammation and immune markers are still off, would disprove the Psychobabble once and for all right? It cannot be psychological while you are unable to feel/think.
SOC
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Oh, they'd think up something.
It's not like they actually feel the need to provide sound scientific evidence of their theories.
heapsreal
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I would put my hand up for that, i would love to be in the comatosed state for awhile. Every night for a week, be like having a sleep holiday
alex3619
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Hi lnester7, channeling my inner psychobabbler:
"Clearly the subconscious is still working in these asleep people. We do not know how enough about the subconscious, but its thought by some that coma patients can hear people talking to them. While a person is asleep we can't correct the dysfunctional thoughts that cause the problem, so this is completely consistent with our model. "
Having said that I would like to see prospective studies. If we followed a thousand people over ten years we could monintor every factor, every stage in the chemistry (and of course behaviour) in people as many of these will get ME or idiopathic chronic fatigue. This would require money however, resources, and about fifteen years (allowing for startup and post study issues).
The days of psychobabble are numbered. They are being disproved, step by step, for most of the illnesses they claim are psychosomatic (or the current buzzword).
Bye, Alex
biophile
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I just finished watching the conference on YouTube. Lipkin was impressive overall. I am glad he is on board, and I agree with him that the landscape is changing for ME/CFS. I would still like to see tissue studies though.
Poulton's blog was much better than Hanlon's original blog and his subsequent responses. However, I do not get the impression that Hanlon is maliciously "stirring" on purpose, he is just expressing his understanding and opinions, some of which just happen to be demonstratively questionable. I'm basing that on his recent blogs only.
FWIW, here is the quick comment I posted on his (3rd?) blog, but there are much better comments than mine:
lnester7. Several months after noticing the onset of symptoms, I started feeling noticeably sleep deprived too, so I become intrigued by the idea that if I could just have a good 24 hours of deep sleep I would be fine again. I vaguely remember the coma or deep sleep induction on ME/CFS patients, as a hypothetical test, rather than one that has actually been done. It sounds old-school to me. I do not recall how long it would have to be in order for the soma to recover from the effects of the psyche, but if I channel my inner biopsychosocial-babbler as Alex has similarly done, I would have gone on about deconditioning if the sleep lasted more than 24 hours.
Depending on the variables, such as length of induction and definition for improvement, I have doubts about such a test. Waking up permanently cured would make me suspicious about the nature of the illness, but waking up temporarily somewhat better could just be from an excellent sleep which we are lacking. Unless this state somehow allowed some sort of reset, how would it cure a psycho>somatic illness anyway when the negative subconscious processes would just resume upon consciousness and eventually bring the patient down again? It could also simply mean that the patient has a primary sleep disorder, rather than a psycho>somatic illness.
Poulton's blog was much better than Hanlon's original blog and his subsequent responses. However, I do not get the impression that Hanlon is maliciously "stirring" on purpose, he is just expressing his understanding and opinions, some of which just happen to be demonstratively questionable. I'm basing that on his recent blogs only.
FWIW, here is the quick comment I posted on his (3rd?) blog, but there are much better comments than mine:
lnester7. Several months after noticing the onset of symptoms, I started feeling noticeably sleep deprived too, so I become intrigued by the idea that if I could just have a good 24 hours of deep sleep I would be fine again. I vaguely remember the coma or deep sleep induction on ME/CFS patients, as a hypothetical test, rather than one that has actually been done. It sounds old-school to me. I do not recall how long it would have to be in order for the soma to recover from the effects of the psyche, but if I channel my inner biopsychosocial-babbler as Alex has similarly done, I would have gone on about deconditioning if the sleep lasted more than 24 hours.
Depending on the variables, such as length of induction and definition for improvement, I have doubts about such a test. Waking up permanently cured would make me suspicious about the nature of the illness, but waking up temporarily somewhat better could just be from an excellent sleep which we are lacking. Unless this state somehow allowed some sort of reset, how would it cure a psycho>somatic illness anyway when the negative subconscious processes would just resume upon consciousness and eventually bring the patient down again? It could also simply mean that the patient has a primary sleep disorder, rather than a psycho>somatic illness.
biophile
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alex3619. My copy arrived about a week ago but I have been too busy or brain foggish to start reading it properly for note taking. I did however have a quick scan through a few times to see what was being covered. One page which made me laugh was her account of being told by a doctor that her suspected pregnancy (symptoms and supposedly-unreliable home test) was probably a "hysterical pregnancy", only for the reliable test to later confirm a genuine pregnancy. Such speculations seem inappropriate when stated before the reliable test result even comes back! It sounded to me this was one of the key moments which encouraged her to start questioning deeper the profession's tendency of defaulting to psychogenic explanations for unexplained physical symptoms.
The days of psychobabble are indeed numbered. There have been numerous systematic reviews over the last decade which have sobered up a lot of the hyperbole surrounding psychological factors in illness/disease and the placebo effect. Also, unsurprisingly, prospective research generally finds less associations than retrospective research. I was satisfied to accept whatever remained as genuine, but one challenge which Angela (and others) has indirectly encouraged me a while ago to explore further, was the issues involving psychometrics and response bias etc, which may further reduce the strength of the remaining associations.
I take the approach that the mind-body connection exists, but has been overstated, oversimplified, and overgeneralized, for ideological, political, and academic purposes. I think well-conducted studies into epidemiology and neuro-endrocine-immune interactions will elucidate something significant in certain situations. I have explored the evidence for psychosocial factors in other diseases, and ME/CFS does not necessarily stand out, such associations are claimed in many conditions. In fact, contrary to the oceans of psychobabble waving across us, the evidence is weak at best; after decades of claims there has been no well-conducted prospective study on this issue for medically diagnosed ME/CFS patients.
Another angle I've also been considering is the early stage disease processes in patients before symptoms becomes apparent enough for traditional diagnosis. There are diseases which can cause changes to mental functioning before the classic physical symptoms emerge. An example I often use is premorbid depression and Parkinson's disease. This association is usually attributed to the beginnings of dopaminergic neuronal death, giving the illusion that depression contributes to the development of PD, when it is probably an epiphenomenon (although I cannot rule out with absolutely certainty that severe depression could not contribute at all to the underlying process). Assuming that pre-morbid psychosocial stress and pre-morbid psychiatric symptoms are indeed associated with ME/CFS (the evidence is poor and conflicted), I have therefore wondered if something similar is happening for ME/CFS.
This line of thinking has me also wondering about other potential biomedical factors which have never been explored much, such as low levels of toxins in the womb and childhood, leading to very subtle developmental alterations which may increase susceptibility to some diseases. In animal studies at least, some of these toxins have at been shown to affect immunity and the stress response, and affects future generations.
The days of psychobabble are indeed numbered. There have been numerous systematic reviews over the last decade which have sobered up a lot of the hyperbole surrounding psychological factors in illness/disease and the placebo effect. Also, unsurprisingly, prospective research generally finds less associations than retrospective research. I was satisfied to accept whatever remained as genuine, but one challenge which Angela (and others) has indirectly encouraged me a while ago to explore further, was the issues involving psychometrics and response bias etc, which may further reduce the strength of the remaining associations.
I take the approach that the mind-body connection exists, but has been overstated, oversimplified, and overgeneralized, for ideological, political, and academic purposes. I think well-conducted studies into epidemiology and neuro-endrocine-immune interactions will elucidate something significant in certain situations. I have explored the evidence for psychosocial factors in other diseases, and ME/CFS does not necessarily stand out, such associations are claimed in many conditions. In fact, contrary to the oceans of psychobabble waving across us, the evidence is weak at best; after decades of claims there has been no well-conducted prospective study on this issue for medically diagnosed ME/CFS patients.
Another angle I've also been considering is the early stage disease processes in patients before symptoms becomes apparent enough for traditional diagnosis. There are diseases which can cause changes to mental functioning before the classic physical symptoms emerge. An example I often use is premorbid depression and Parkinson's disease. This association is usually attributed to the beginnings of dopaminergic neuronal death, giving the illusion that depression contributes to the development of PD, when it is probably an epiphenomenon (although I cannot rule out with absolutely certainty that severe depression could not contribute at all to the underlying process). Assuming that pre-morbid psychosocial stress and pre-morbid psychiatric symptoms are indeed associated with ME/CFS (the evidence is poor and conflicted), I have therefore wondered if something similar is happening for ME/CFS.
This line of thinking has me also wondering about other potential biomedical factors which have never been explored much, such as low levels of toxins in the womb and childhood, leading to very subtle developmental alterations which may increase susceptibility to some diseases. In animal studies at least, some of these toxins have at been shown to affect immunity and the stress response, and affects future generations.
heapsreal
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His name escapes me at the moment but he was an amercian psychiatrist who treated cfs/me and he classed it as a neurosomatic illness(Alex u will remember his name) and he had success in using drugs like ketamine etc. Now i wonder if drugs like this and being anaethatized helps our little brain by reducing inflammation etc. There has been occassions where people have had surgeries unrelated to cfs/me and have recovered or greatly improved. I think we have to remember that not only do we have infection/immune issues but also neurological(not psychological) problems too. Our body is under alot of stress from cfs/me, so turn off our brain and body may just gives us a break and a second 'wind'.Sometimes these drugs that affect our minds/brain can help us.
alex3619
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Heapsreal, do you mean Jay Goldstein iirc? http://en.wikipedia.org/wiki/Jay_Goldstein
Biophile, sleep therapy has been tested. A hospital in the UK specialized in it. The name Charing Cross comes to mind, but I am not sure of that. It didn't work anyway.
What amazes me is how fast so many jump to presumptions of psychosomatic causes before they even have the evidence.
Bye, Alex
Biophile, sleep therapy has been tested. A hospital in the UK specialized in it. The name Charing Cross comes to mind, but I am not sure of that. It didn't work anyway.
What amazes me is how fast so many jump to presumptions of psychosomatic causes before they even have the evidence.
Bye, Alex
heapsreal
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Thats it Alex, a cfs moment called a brain fart, lol
biophile
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As primary sleep disorders must be ruled out for a CFS diagnosis, it is unsurprising that sleep therapy did not help much, although I would have thought better sleep may help a little. I had a sleep test done once, there were some disturbances but not enough for primary sleep disorder or to blame illness on them.
Isn't one of the recent MRC-funded studies on sleep medication ie sodium oxybate?
The jumping to presumptions of psychosomatic causes continues even after they have the evidence! Of course, some of us could also be accused of jumping to biomedical causes before and after we have the evidence.
alex3619
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Hmmm, I wish it were a moment. With the number of times that happens to me Heaps, its like I have been eating nothing but the mental equivalent of a spicy mexican bean chili for weeks. It took me a minute or two to recall Goldstein's name too, and I own a copy of one of his books. Thats our brain in action. Bye, Alex