Harvard's "med" and "ed" is an actual disgrace

There’s also helpful information on two psychotherapies which may play a role in CFS treatment—
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"The guide also covers Cognitive Behavioral Therapy (CBT), an approach that helps people control the thoughts and behaviors that may trigger CFS symptoms.”
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Do they have to put "may" in front of everything? I thought that was just the Mayo Clinic.

JaimeS said:
But why bother with facts where there's a buck to be made? Am I right or am I right?
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You may be.
 
@JaimeS

I haven't read the reply posts yet but it may be worth noting that Harvard may be influenced by the proximity to Jon Kabat-Zinn. I've mentioned him before in similar context. He does his work out of Massachusett's Medical Center.

https://www.umassmed.edu/cfm/About-Us/people/2-Meet-Our-Faculty/Kabat-Zinn-Profile/

I don't know how far the advocates mentioned are willing to go with this but it may be a useful possibility to consider appealing to him directly about how his approach cannot succeed with this illness and why that is.
He has really good credentials so I don't know if that will help as this whole approach is one big experiment in woo.

Just a thought.
 
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Also, wanted to add that I don't think that this model is useful for anything else either (but you knew I thought that so just sayin') But if we want to get out from under this it's not one of those allied situations I think.

inox said:
Is that a hoax? Some sort of social experiment...?
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It's definitely a huge social experiment.

Milo said:
I wonder whether Dr Komaroff could look into it
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I could be wrong but I don't think Komaroff is up to this. I hope he can be helpful here.
 
dave30th said:
I'm ordering this...
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Why must u hurt yrself.

But seriously -- one or two in USAWG did purchase it, including Mary Dimmock.

She says that not all of it is terrible, but the management section is where it gets really bad. It acknowledges issues with PACE (!) but still recommends CBT as a good treatment. She calls it "ambiguous" where GET is concerned, which to my mind means that nowhere does it mention that pushing yourself could potentially make you permanently worse. Adding that as a caveat because I don't want to put words in her mouth.

Weird/intense emphasis on alternative treatments and attitude, and next to no discussion of prescription treatments, common comorbidities.

And it claims that 40% of patients recover.
 
TiredSam said:
Do they have to put "may" in front of everything?
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Well, yeah. They do. There is no evidence for any of it. So the best they can do is "may be", "could be" and so on. That's all this body of research is: it may be this, it may be that, nobody knows, especially not us. Then any legal challenge over harmful medical advice can be met with a quiet retraction and a valid legal avoidance of responsibility by saying they only suggested it "may" help. Don't ask them, they just work there and they're just teaching the controversy.

Which normally should give pause, but that's the beauty behind using psychological research on a medical problem: none of the rigor and objectivity of medical research, all the weight and credibility, as long as you add the little "may" qualifier that means you know it's not credible evidence but nobody cares because we're not considered to have a "real disease" and "patients" do not have patient rights, only patients do.

Putting a squirrel tail up your butt may cure cancer. Or not. We're just putting it out there. Find out more at harvard-med-ed.goop.com/chronic-fatigue-may-bes-and-could-bes.
 
rvallee said:
Well, yeah. They do. There is no evidence for any of it. So the best they can do is "may be", "could be" and so on. That's all this body of research is: it may be this, it may be that, nobody knows, especially not us. Then any legal challenge over harmful medical advice can be met with a quiet retraction and a valid legal avoidance of responsibility by saying they only suggested it "may" help. Don't ask them, they just work there and they're just teaching the controversy.
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They do it to cover themselves, not to admit that they may be wrong. If challenged, there's no-one more stubborn than a woo merchant. It's a very passive-aggressive "may", kind of like when someone says "I would like to suggest" through gritted teeth.
 
rvallee said:
because we're not considered to have a "real disease" and "patients" do not have patient rights, only patients do.
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That we are patients[and-also-simultaneously-not] is some real doublethink, and it leads to some intriguing feats of illogic. I've had some thinky thoughts about that. [Edit: figured out the changes in bookmarking & fixed the link!]

Putting a squirrel tail up your butt may cure cancer. Or not. We're just putting it out there.
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Under the Harvard name. For $15 US.
 
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JaimeS said:
And it claims that 40% of patients recover.
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In the very early days of blood transfusions (before the issue of blood groups was understood), where some people were presumably lucky enough that it worked for them, how many died or were seriously harmed because it did not? (Genuine question, I have no idea of the answer).
 
The Harvard article is another demonstration of either the schizophrenia or the unthinking nature of "evidence-based" medicine when it comes to ME. Mixing and matching good biomedical disease evidence with BPS management practices without apparently thinking whether it makes medical sense for those things to be stuck together.

While there are still some errors, the article does a reasonable job describing the nature of the disease, the demographics, the evidence of pathophysiology, etc.

But the management section is this weird grab bag of "evidence" that mixes discussion about energy envelope/pacing (although still fear of activity) with CBT, GET, and a section on acupuncture, Yoga, Tai Chi, chiropractic, and massage that's particularly strange in how much emphasis they give it (about 1/2 of the whole section on treatment). Couldnt tell if they were padding the section out or they really believe this but there was a lack of ME specific evidence and no caveats on the risks - e.g. some of these can also cause PEM, are not appropriate if patients have severe OI, etc.

On GET, they acknowledge the issues with PACE and then conclude "Based on current evidence, the value of GET has been neither proved nor disproved." But they fail to mention AHRQ's finding of a lack of evidence of efficacy combined with evidence of harms from GET which should be the key point. They then go on to say that if you try graded exercise "Your program should be light enough to avoid exhaustion, but challenging enough to be invigorating and capable of increasing your strength and stamina." All in all, the content puts patients at risk of harm

Regarding CBT, it also states that is neither proven or disproven for CFS but then states "Advocates of CBT say it is most effective when it decreases a person’s perception of problems related to activity and increases the sense of control over." Ugh
 
@Medfeb, I assume you have the package. I can just see the flyer - which is about how to manage your CFS, so the issue is the management bit.

I think it would be very useful to have this as evidence for the NICE guidelines committee @adambeyoncelowe, @Keela Too, @saranbonser. It provides a clear example of how what purports to be respectable academic endorsement of CBT and GET is in fact just a jumble of confusion, with chiropactic thrown in to prove the point.

Is there a transcript available, or should the NICE committee get hold of the package (via the NICE techies)?

What I think this illustrates is that 'evidence-based', like 'biopsychosocial' is a term that could be used universally in medicine but is only in fact used in situations where its application is dubious or phoney. It is a bit like '100% genuine orange juice (from concentrate)', which really means the cheapest sort of boiled down and rediluted stuff. 'Evidence-based treatments' is really only used for therapist-delivered treatments where the evidence is dodgy. It is not that there is anything wrong with evidence-based medicine, any more than there is anything wrong with pure orange juice.
 
@Jonathan Edwards Yes, I do. Its a PDF

Just to clarify - they did not mention "evidence-based" - I did because medicine touts the value and necessity for everything being evidence based but in ME at least, its lipstick on a pig

Two core issues to me are that 1) the ME evidence base is still polluted with the BPS trials and in spite of bad methodologies and inclusion of patients with other conditions, these studies still gets applied to ME without sufficient questioning and 2) because of years of BPS promotion, a biased narrative has built up about this disease that shapes what people think and write about this disease

i'd add that for both CBT and GET, its not solid endorsement as they state its not proven or disproven. But the article goes on to accept and still appears to buy into the narrative
 
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