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

[Trish]

This strikes me as an odd observation. So you are comparing clinicians who think pathogens might have a role, and the brain may be involved, to psychs who maintain our obsession with fatigue reduces to false illness beliefs? Perhaps I am misreading you?

I think the problem is the level of confidence with which some clinicians state that they 'know' ME/CFS is psychosomatic, or is caused by ongoing infection, or is caused by brain damage or malfunction. Yes, there has been lots of research, but adopting a particular causal explanation when none has been established beyond question is unhelpful, whether that explanation is psychological or biological.

All we can say for sure is we don't know. As far as I'm concerned, the only certainty is that it is not psychosomatic or caused by false illness beliefs or fear of exercise. The lack of recovery despite the best efforts to twist the data when people are treated with CBT/GET at least puts that beyond doubt.

Why? She's earned her assumptions. She helped put us smack in the public square, at least for a time. Besides, we all have some earned assumptions, just as most of us have opinions as to culprits , whether pathogens or immune issues or what have you. Should she shelve hers until something diagnostically definitive happens - because if so, she may never have the chance to express her opinions and her underlying assumptions in her lifetime, or any of ours for that matter. I don't share @Jonathan Edwards optimism.

I don't understand the concept of 'earned assumptions'. Just because someone does good work as a journalist researching, interviewing and writing up the behaviour and beliefs of clinicians at the CDC over the years, doesn't earn them any right to state as fact and be agreed with or believed on issues such as the biological cause(s) of ME. We are, and should be free to point out the lack of evidence supporting those views.

 

[duncan]

We are, and should be free to point out the lack of evidence supporting those views.

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

I don't understand the concept of 'earned assumptions'.

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.

Just because someone does good work as a journalist researching, interviewing and writing up the behaviour and beliefs of clinicians at the CDC over the years, doesn't earn them any right to state as fact and be agreed with or believed on issues such as the biological cause(s) of ME.

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

Yes, there has been lots of research, but adopting a particular causal explanation when none has been established beyond question is unhelpful, whether that explanation is psychological or biological.

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.

All we can say for sure is we don't know. As far as I'm concerned, the only certainty is that it is not psychosomatic or caused by false illness beliefs or fear of exercise. The lack of recovery despite the best efforts to twist the data when people are treated with CBT/GET at least puts that beyond 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.

 

[Trish]

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

I think there are contexts and degrees of certainty. When writing a history that is based on direct evidence through interviews etc, and can therefore claim to be factual, to place alongside it statements about aetiology with the same level of claim to being factual, that becomes problematic. If presented as 'these are the findings of this and that researcher', that would be fine, as presenting the context of those ideas.

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.

Medical experts who are claiming to expertise should acknowledge the level of certainty for any claims they make. The suggestion of an assumption being 'earned' seems to me to suggest eminence based medicine rather than evidence based medicine, which is not helpful. I suspect we may be in agreement but just using different words.

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

Sure, if expressed as opinion, with the basis of that opinion given, not if expressed as established fact. I defend the right of people to say all sorts of things I disagree with, but in the context of writing what claims to be a historically accurate and scientifically factual account, and to be doing so on behalf of a patient community, I think there is a level of responsiblity to be accurate, and to state where something has not been established beyond doubt.

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.

Sure, but there's a time and place for speculation, and it should be presented as speculation, not as fact.

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 agree it's important to tell the context, we're not disagreeing on that. Hillary has played a valuable role in reporting some of the history.

 

[Forbin]

It seems to me entirely right to move attention from occasional outbreaks of nobody knows what, to ME/CFS as a not uncommon disorder that seems much the same whether or not it starts with any sort of infection. That has been very much borne out.

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

Possible Causes

Infections:

People with ME/CFS often have their illness begin in a way that reminds them of getting the flu. This has made researchers suspect an infection may trigger ME/CFS. In addition, about one in ten people who become infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti will develop a set of symptoms that meet the criteria for ME/CFS. People with these infections who had severe symptoms are more likely than those with mild symptoms to later develop ME/CFS symptoms. But not all people with ME/CFS have had these infections.

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

 

[Ariel]

• Who has benefited from the CDC's longstanding policy of disregard for ME?

Nobody

Is this really true, though?

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

 

[Jonathan Edwards]

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.

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.

 

[Jonathan Edwards]

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

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.

 

[MSEsperanza]

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:

Robert Francis Kennedy Jr. (born January 17, 1954) is an American environmental lawyer and author who is known for promoting anti-vaccine propaganda and conspiracy theories.
https://en.wikipedia.org/wiki/Robert_F._Kennedy_Jr.

 

[Medfeb]

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.

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.

 

[Trish]

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.

And yesterday they took a huge step backwards by having a CBT/GET proponent as guest speaker on the CDC ME/CFS stakeholder call.
See this thread: https://www.s4me.info/threads/usa-c...nd-communication-calls.248/page-7#post-418855

 

[dave30th]

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.

 

[NelliePledge]

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 completely abrogation of their responsibility as public health professionals--especially given how they had been citing it previously.

And the British are supposed to be experts at fudging issues. Certainly on GET the CDC appears to be leading the world on fudging.

 

[Medfeb]

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.

 

[NelliePledge]

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.

But in this case it’s worse they actually gave him a platform at their meeting

 

[dave30th]

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.

 

[dave30th]

The Kennedy listeners would likely be those who would malign us as malingering, psychosomatic, welfare cheats, etc.

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

 

[Charles B.]

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.

 

[Louie41]

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.

 

[dave30th]

Kennedy’s anti-vaccine rhetoric coincides with a general antipathy toward the pandemic response - lockdowns, masks, precautionary measures, etc.

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.

 

[Sean]

they kept stating that people misunderstood what they meant by CBT and GET, which was ridiculous,

Translation: 'It is not our fault the rest of you are idiots.'

The real problem is that we understood all too clearly, through hard earned lessons, what they meant by CBT & GET, and the consequences of it.