"The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

Sure, it's good to debate any views, and to disagree. But you suggested her's were unhelpful.

You don't think medical experts make assumptions all the time, and consider their's earned? I might suggest HJ could qualify as an expert on ME/CFS issues.

But it does afford them the right to opine, at least in my estimation.

I disagree, depending on how you are using "adopting." I think speculating can be helpful. It can be harmful, too, as in BPS musings. It's a two-edged blade, no doubt.

Yes, clearly the GET/CBT crap has been debunked, but it's not true that all we can say for sure is we don't know. We know the history. We know context. We sorta know WHY we don't know about cause. That matters and needs to be told, and not too many are out there that can do it in a knowledgable and compelling manner.

 

I would agree with this if we had some idea of the mechanism of ME/CFS, and thus would have some basis for investigating treatments, even if we didn’t understand the origin of the illness.

Treatments are developed for cancer even when the origin of the particular cancer is mysterious, but that’s possible because something is known about the mechanism of cancer in general.

In the absence of understanding the mechanism that causes the symptoms of ME/CFS, would it not be reasonable to try to study the known triggers of the illness to see if approaching it from that direction might lead us to an understanding of the mechanisms? Even if those triggers only applied to a subset of patients, the mechanism causing the symptoms might be common to a much larger group of patients.


The CDC has a short list of “Possible Causes” of ME/CFS (including infections) here: https://www.cdc.gov/me-cfs/about/possible-causes.html

I expect SARS-CoV-2 will be added to that list of possible causes at some point.

 

Is this really true, though?

Proponents of psych/behavioural approaches do it for a reason.

 

Absolutely, but there seems little point in searching for an unknown mystery virus that might have caused one or other outbreak of an illness that may have led to some cases of ME fifty years ago.

 

No doubt BPS enthusiasts have made a living out of PWME. My point was more that this has nothing much to do with the CDC having a 'policy of disregard for ME'. Ms Johnson is missing the point. In recent years the failing of the CDC has been to look at the evidence properly and make appropriate recommendations. If I remember rightly they argued against GET sometime around 2015 but for the wrong reasons.

 

Apologies for just popping in, couldn't read further through the thread when I saw this:

Hillary Johnson:
"I did a podcast with the gracious Robert Kennedy Jr., in which we explored the troubled history of--and hypotheses about--Myalgic Encephalomyelitis. Great to talk to someone with his encyclopedic, analytical mind."

Good gracious!

It's good to see some people objecting, e.g.:

"I found what you were saying to be interesting. But the host, I wish he would have just shut up about the vaccines and toxic chemicals."

Hillary Johnson's disappointing reply:

"Thanks. Those are his long-time areas of interest. He offered a platform to entertain other ideas."

(Copied the Tweets' text for readers who disabled displaying external content.)

Edited to add:

 

Yes, they failed to look at the evidence properly but driving that was their misconception about the nature of the disease. Reeves, the leader of the CDC program until 2010, referred to the outbreaks in the 1980s as mass hysteria. He is the one who broadened the criteria for CFS to focus on the "unwell" and in the process, increased the prevalence 10 fold.

Regarding CDC and GET - CDC recommended GET based on PACE and related earlier studies. Even with Tuller's work in 2015, they would not take it down, arguing that it's important for patients not to become deconditioned and that patients can need help coping. They disappeared the terms CBT and GET in 2017 because they accepted that the terms themselves were tainted by how they had been defined and studied in PACE and related studies. But they have never made a public statement about PACE or GET or CBT.

 

This has always bothered me. They are the lead public health agency in the US. They promoted and cited PACE, and then they didn't. I asked multiple times for a comment from Unger or someone about PACE and they refused. That's a complete abrogation of their responsibility as public health professionals--especially given how they had been citing it previously.

 

Yea, remember that. And because CDC has refused to address it, they have given the space for clinicians like Gluckman to continue to recommend it.

 

they kept stating that people misunderstood what they meant by CBT and GET, which was ridiculous, and they knew it. No one misunderstood. They were just not willing to act responsibly, admit their errors and apologize for having made such a mistake. I thought their behavior was disgraceful.

 

What's the basis of this assumption about Kennedy's audience? I think anything that gives him credibility is problematic.

 

Kennedy’s anti-vaccine rhetoric coincides with a general antipathy toward the pandemic response - lockdowns, masks, precautionary measures, etc. Those who gravitate toward such a philosophy would find the notion of Long Covid to be a fatuous creation designed to prolong restrictions and stoke hysteria. I see this theme proliferate on social media all the time.The language I used is often employed by these actors. Kennedy and Johnson discussing post viral disease in a different context would counteract this predilection, even if various elements of the discourse, specifically that relating to etiology/pathophysiology, went off the rails. If people who would have previously trolled on us on social media leaves thinking differently about CFS, that’s a victory in my book.

The obvious rejoinder against my argument is who cares what conspiratorially minded Twitter trolls think about the disease? They don’t impact policy, research, or treatment decisions, and they’re best ignored. Also, the last thing CFS needs is an alliance with anti-science hooligans spreading nonsensical accounts about toxic chemicals and vaccines. it would validate all of the caricatures of this patient cohort. Any upside would be a Pyrrhic victory.

However, I don’t think anyone outside of Kennedy’s audience and this group is going to pay attention to the fact that Johnson spoke on his podcast. We are invisible, and if someone on planet BPS uses it to validate their preconceptions about us, fine. They would likely harbor those sentiments regardless of such an appearance.

The more people realizing that CFS is a serious, life altering condition, the better. If some of those people think vaccines or toxic chemical cause the condition, it’s irrelevant to me. They won’t impact the charities, researchers, of government functionaries promoting/studying the disease. They may never give it another thought unless it’s mentioned in passing, but what they won’t do is harass, malign, or denigrate CFS sufferers.

The less abuse from vitriolic, sinister trolls, the better. And when you’ve lost your livelihood, family, and general existence to this disease, you do care about such things.

 

I read Osler's Web back when it first came out and I had the mental bandwidth to understand it. As I recall, it was very heavy going, both for the level of detail presented and for the voluminous number of citations of authoritative documents and interviews. The Why is but a mere shadow of Osler's Web, just as someone sick for as long as Johnson has been is likely a mere shadow of what they once were. To evaluate Johnson's work based upon this slim volume does her a real disservice.

And no, I don't agree with some of her views about cause, etc. but she helped put ME on the map in the US, and allowed many sufferers to begin to get a grip on how and why we were abandoned by the CDC.

 

It might coincide or overlap--but Kennedy is an anti-vaxxer from the left, not the right. that's a big difference. I don't know that your assumption about his audience is warranted. You're right about attitudes toward long Covid online, but I don't share your belief that these are Kennedy's audience. His audience would perhaps more likely believe long covid exists and is being caused mainly by vaccines.