Scientists trade insults over ME (JHP special issue)

Old Bones

Old Bones

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Countrygirl said:
http://www.miningjournal.net/life/2...yndrome-reality-conflicts-with-medical-study/

There is quite a good article about the recent shenanigans above:
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I agree -- it's one of the better articles I've read during the past few days. Most have been remarkably similar, and have focused primarily on the conflicting opinions associated with the PACE study. In contrast, Doctor McLean's article is informative, providing a summary of the "backstory" in a very readable fashion.

The first few paragraphs about medical research and evidence-based medicine may catch the attention of those who either aren't interested in ME/CFS, or who may have already established their own bias. We need more original/independent articles like this one, instead of the "churnalism" that is rampant in the mainstream news media these days.

When a podiatrist from a small U.S. city can do such a good job of reporting, it makes me wonder how the ME/CFS advocacy community might find similar representatives elsewhere to spread the story within local newspapers. Perhaps Doctor McLean has a friend, or family member, with ME. What else could explain his generally accurate, and sympathetic, understanding of the broader issues?

Thanks for posting this, @Countrygirl .
 
Skycloud

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M

me/cfs 27931

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Mining Journal said:
American physicians have been strongly influenced by the PACE trial. This may be the result of our devotion to the concepts of “Evidence Based Medicine.” One simply has to publish a study, whether well-constructed or not, biased though it may be, perhaps even deeply flawed, and the results can be adopted and repeated as gospel.
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Exactly. This issue alone probably deserves its own thread.
 
M

me/cfs 27931

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I just sent the Mining Journal article to my Kaiser Permanente primary care doctor. I try to be very selective about what I send him, so as not to be annoying.

We've had some discussions in the past about evidence based medicine and PACE, and the article supports many of my assertions. We've been having this conversation long enough that I think he'll be receptive.
 
Countrygirl

Countrygirl

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Starsister

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deleder2k said:
I don't know how the medical establishment that doesn't know about ME perceives this.

This has been going on for years and years. Millions are suffering. We need a major disruptive force. Perhaps this is whats needed to get attention. I don't know, but I know that sometimes you have to do something out of the ordinary. Something that will make fuss.

I don't want to compare the case of ME to HIV in the 1980's, but lets just remember that to get people to understand the gravity of the situation people needed to do something else than write in the newspapers and to write letters to politicians. Sometimes you need to change the narrative. Make noise. Get attention. A story like this could become the #1 story in a split-second. It is possible.

I haven't read everything that Coyne has written though...
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I think the behavior and verbiage of these academics is shameful and unprofessional, but I agree that maybe at this point, any attention is better than none. As in any movement, we need the radicals up front, making waves, fighting for patients rights,even in obnoxious ways, and others working on the follow through on other fronts like medical studies, politics of the medical field, public education, and funding. But I've been sick with this got thirty years and don't see headway so I don't expect any support on the horizon before I die. The HIV advent in the 80s actually was what helped me affirm for myself that collection of symptoms was actually a syndrome of some kind. I related to many of the early HIV symptoms....it just resonated. Had I not been lesbian for many years..(the lowest risk group) as well as celibate, I would have worried that I had AIDS. But the auto immune concept fit and still does. If I were younger and felt better, I'd be starting a patient uprising against the medical system. WE NEED AN UPRISING! But who's got the energy? Our family members won't advocate for us, like families of other diseases do, because our family members and friends just think we are lazy complainers.
 
Starsister

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Haven't seen any of the heaviness of it being a psych problem here in US...not my city and community anyway. Sounds like maybe more of a UK thing? Hadn't heard of reference to bio psycho social model here except I'm a social worker so our professional perspective in the effects of person in the environment, so I did lots of those assessments when working in psych hospitals....but only psycho social of course. Never seen it applied in hospitals or clinics to undermine seriousness of medical conditions. Maybe we are lucky to be behind the times in the US on CFS! I do believe the mind and body is a system that works together, but that should not be used as an excuse to "blame the patient" for everything, esp to quell the feelings of helplessness, or protect the egos of healthcare providers who can't just learn to say "I don't know but I want to learn". Was speaking to the founder of CFS/Fibromyalgia International yesterday and she said she is convinced they are actually taught in med schools to not admit they don't know. I had to agree, because I can't think of any place else where you see so many people professional role or not, who can't just be open to not knowing everything. If lawyers are driving everything, Seems there would be more liability in providers saying they don't know, and helping us discover, rather than just misleading us and committing negligence. Maybe that would get their attention, if we began filing lawsuits for negligence.....I am serious, folks!
 
D

Dolphin

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On the physical versus mental point I am uncomfortable with any suggestion that people can't challenge CBT and/or GET in theory, only based on flaws that they can isolate in trials.

While we may not know too much for definite about the condition, I think we can fairly argue that there is abnormal response to exertion in the condition. I think the onus would be on anyone else to argue this is incorrect.

I think one can also make a good argument that some symptoms are not readily explainable by deconditioning and the like e.g. tender lymph nodes, sore throat, urinary frequency, alcohol intolerance, etc.

Building up from these couple of premises (there are probably others), one can point out flaws in the CBT and GET model. There are also logical flaws.

People can also have their own personal experiences that can make them justifiably sceptical. For example, people didn't go to bed when ill in my household so I never did before I became severe. I perhaps spent a couple of days at most consecutively in the house in the early years of my illness. And in the period that I deteriorated from mild to severe (when I was undiagnosed) I wouldn't have spent a single day in the house. I went out and did things and deconditioning simply does not make any sense.

As well as people being, I would argue, able to be justifiably sceptical of the model(s), I think also think they can be justifiably cautious about undertaking the therapies given all the harms that have been reported.
 
Jonathan Edwards

Jonathan Edwards

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Dolphin said:
On the physical versus mental point I am uncomfortable with any suggestion that people can't challenge CBT and/or GET in theory, only based on flaws that they can isolate in trials.
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I absolutely agree with that. I think I made the point that criticism of the theory and criticism of a test of the theory are separate issues but may not have been clear.

CBT for CFS/ME is for a start contrary to a basic empirical psychiatric rule. Psychiatric trainees are taught that there is no point in trying to treat irrationality with rational argument. If you think about it it does not make sense because irrationality is imperviousness to rational argument. More importantly psychiatrist have found over a century or so that it does not work anyway.

So if the idea is that CFS persists because of an irrational belief then the wrong approach is to try to change that with rational argument (CBT). If it were classified as a psychiatric disorder it would come under psychosis (irrationality) and rational argument ain't no good for psychosis (I've been there, done that at home). If CFS/ME is due to irrational belief some other form of treatment needs to be found. CBT for ME is a bit like recommending cod liver oil for arthritis to lubricate the joints. Not good logic.
 
Starsister

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Medical system likes CBT because the insurance companies like it and will cover it because it is "sounds" concrete and "looks" like it works fast, and they can pretend it is "quantifiable" by behavior, when in reality, just like with emotional issues, it only postpones or prevents working on the real, underlying cause of issues. If it is being used for short term symptom management, then it should be called symptom management ...and while they keep working on underlying cause. Everything has a cause. Sounds like some and providers are still just confusing the cause with the symptom. Bad enough if it's isolated providers, but systemic medical negligence if it is becoming institutionalized across the board by med schools and insurance companies.
 
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