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

[Jonathan Edwards]

I don't have her exact words, but I have heard Dr. Klimas, an immunology researcher and clinician, say on more than one occasion that she was shocked to see the immunological abnormalities present in CFS patients that sought her out for help.

She says this on camera in 'Unrest'. The problem is that the assays used have proved to be unreproducible. And it is not clear that they would mean much if they were reproducible. It is a pity that Klimas was still claiming gross abnormalities in 2015 despite this.

 

[Esther12]

Labels aside, Strauss was quite disparaging of people with ME and disbelieving of what they were experiencing. In one scientific paper, he concluded people with ME suffered from "histories of unachievable ambition, poor coping skills, and somatic complaints.” And he concluded a patient's perception of severity and response to treatment were correlated with their mood. In a 1988 New York Times article, he described patients as anxious, depressed and neurotic on the one hand or driven and under undue stress from busy lives on the other.

He was a strong proponent of the BPS model being advanced by Wessely et al in the UK by at least the mid 1990s and in 2000, invited just 3 others to NIH's CFS State-of-the-Science Consultation to improve the quality and direction of ME research - Wessely, Sharpe, and a US psychiatrist.

That same disparagement of the illness itself - not just of this label or that or of a given theory of biopathology - is seen in his congratulations of Fukuda noted above. Straus did not believe there was any physical component to this illness, even when the label used was CFS.

I should have been clearer - I was thinking about this quote, that I've seen people post as if it's so clearly self-damning that no further comment is needed: https://www.s4me.info/attachments/strauss-png.17160/

I'd always thought that I could see why he might question the value of a label like CFS, ME, CFIDS, etc, though I think that I also overall disagree.

Some patients can behave in a way that can encourage disparaging views but I think that a lot of this is down to the difficult situation patients find themselves in, and that doesn't justify the prejudiced views some can hold or even promote.

 

[Charles B.]

Irrespective of the etiological speculation that occurred during the Kennedy/Johnson podcast, I do believe that some positives emerged. The Kennedy listeners would likely be those who would malign us as malingering, psychosomatic, welfare cheats, etc. He appeared incredibly empathetic and acknowledged the horrors most patients encounter when confronting arrogant, disbelieving physicians. That’s a victory in my estimation.

 

[chrisb]

I should have been clearer - I was thinking about this quote, that I've seen people post as if it's so clearly self-damning that no further comment is needed: https://www.s4me.info/attachments/strauss-png.17160/

But it is self-damning isn't it? It doesn't stand up to any sort of analytical scrutiny. It purports to say something useful but appears entirely devoid of content.

 

[Jonathan Edwards]

But it is self-damning isn't it?

I don't see that. It seems quite cogent. It may miss the point that within idiopathic fatiguing illness there may be several usefully separable groups, one with PEM that we know think of as distinct enough to be a syndrome. But his concern was almost certainly to do deny something very different - a concept related to mysterious viruses and epidemics and neurological damage - which was almost certainly the right thing to do.

 

[duncan]

Some patients can behave in a way that can encourage disparaging views

Are these patients misbehaving in some manner, and if so, who makes that call?

I think that a lot of this is down to the difficult situation patients find themselves in, and that doesn't justify the prejudiced views some can hold or even promote.

Prejudiced? Against institutions that not just abandoned us, but worsened our lot by deliberately psychologizing us, and rewarding the psych industry and enabling insurance carriers to deny our claims? WE are prejudiced? Not rightly outraged? I'm curious as to your choice of words, @Esther12, and how you frame that statement. Again, who decides our grievances are prejudices?

 

[duncan]

But his concern was almost certainly to do deny something very different - a concept related to mysterious viruses and epidemics and neurological damage - which was almost certainly the right thing to do.

Doubtful it was the right thing to do considering where we find ourselves today.

Moreover, if I read his note correctly, he was trying to disappear a disease entity that was created by the EIS in lieu of ME - or at least reduce it to the symptom of chronic fatigue. Shouldn't he have instead been intent on more aptly researching and characterizing the disease?

 

[Jonathan Edwards]

Doubtful it was the right thing to do considering where we find ourselves today.

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.

If he was trying to disappear CFIDS then bravo - a complete red herring.

He may not have done any research but then I doubt anyone was in a position to do anything useful since decades later we still have no real leads. At least he thought the problem was worthy of attention.

 

[duncan]

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.

If he was trying to disappear CFIDS then bravo - a complete red herring.

Not a good era for the CDC or NIH since the 80's...Seems to me heavy on political expedience and light on deep and accurate and patient-centric research. I mean look at what got screwed up during the 80's: AIDS and Lyme and CFS. How many people grew disabled in the U.S. alone?

Not a decade for the highlight reel.

As for whether or not ME/CFS starts with an infection having little to no baring on the disease course - borne out by whom and how? This is a question very much alive and in play, and most afflicted with it more than a coupe of years know it has yet to have been resolved.

 

[chrisb]

I don't see that. It seems quite cogent. It may miss the point that within idiopathic fatiguing illness there may be several usefully separable groups, one with PEM that we know think of as distinct enough to be a syndrome. But his concern was almost certainly to do deny something very different - a concept related to mysterious viruses and epidemics and neurological damage - which was almost certainly the right thing to do.

Surely by this time he had given up on believing in, or looking for, mysterious illnesses. He thought it was all just illness behaviour within the Imboden, Canter, Cluff model.

 

[Esther12]

Are these patients misbehaving in some manner, and if so, who makes that call?


Prejudiced? Against institutions that not just abandoned us, but worsened our lot by deliberately psychologizing us, and rewarding the psych industry and enabling insurance carriers to deny our claims? WE are prejudiced? Not rightly outraged? I'm curious as to your choice of words, @Esther12, and how you frame that statement. Again, who decides our grievances are prejudices?

I meant the prejudices that can be held and encouraged about patients, but see that I wasn't clear on that.

 

[Medfeb]

Surely by this time he had given up on believing in, or looking for, mysterious illnesses. He thought it was all just illness behaviour within the Imboden, Canter, Cluff model.

Exactly.

 

[Art Vandelay]

Straus made his feelings abundantly clear:

 

[Jonathan Edwards]

by this time he had given up on believing in, or looking for, mysterious illnesses.

Indeed, but Ms Johnson still hasn't, even now.

The point I am trying to make is that however much it may be true that the US medical research system was incompetent and probably negligent in its dealing with ME/CFS, Hilary Johnson's analysis is more likely to drag things back to the naive beliefs of a few infectious disease physicians in the 1950s than to take things forward and remove conflicts between patients and healthcare systems.

 

[chrisb]

I don't disagree with that. There is however a difficulty. When suggestions are made that the name CFS should be rendered obsolete we are always reminded that the natural sensibilities of those already diagnosed with CFS should be respected. and taken into account. Quite rightly so. That applies equally to those who had a diagnosis of ME or PVFS trashed and had forced upon them an apparently spurious diagnosis by those who knew less than the people who made the original diagnoses. The argument cuts both ways. HJ may take her case to extremes but it no doubt reflects her personal experience. Noone is right about everything in this debate. 37 years ago I was told that the condition was at the cutting edge of medicine, and I suppose it still is. It's just that the edge has become blunted.

A name is only a label. The problem is over what is contained within the baggage.

 

[Jonathan Edwards]

That applies equally to those who had a diagnosis of ME or PVFS trashed and had forced upon them an apparently spurious diagnosis by those whon ew less than the people who made the original diagnoses.

But that has not happened. Rather than trashing ME it is at the front of the consensus name, at least in all international research circles, and also in the UK health care system.

We now have a situation where the term ME/CFS is widely preferred and the combination is an explicit acknowledgement that both terms have some problems but also some advantages. What is the point of dragging up an old argument that polarises patients and doctors when we have an agreement in good faith?

There are still some psychiatrists who would like to believe in chronic fatigue, just as there are a few physicians who want to believe in mystery viruses and neuroinflammation. If the international research community now has a reasonably clear focus on what the clinical problem really is and is doing things like genome searches then I don't see things as blunted. I see them as progressing rather promisingly. The UK minister of health has just said we need to pay more attention to ME/CFS because there are no effective treatments.

 

[chrisb]

But that has not happened. Rather than trashing ME it is at the front of the consensus name, at least in all international research circles, and also in the UK health care system.

It's the formative years which are the important ones. People seem to find it hard to understand the shock to the system experienced in the years from 1989( EDIT for those in the UK, 1987 more generally.) Here, suddenly, were a bunch of parvenus of whom no-one had heard, who seemed to have the ear of those in positions of power, or vice versa. It is necessary to understand the context in which Johnson wrote Osler's Web, the nature of the effort which it represented, and how much poorer our understanding would be had it not been done. No-one else was going to do it.

 

[Trish]

As I've said, I haven't read Osler's Web, so can't comment on that, but having just read this shorter book by Hillary Johnson, I have criticised it for assumptions made about aetiology and pathophysiology of ME/CFS which I think are not helpful to the cause of ME/CFS understanding and research.

However I do think she did a valuable service of interviewing key people at the CDC and writing down a record of those discussions which seem to make it clear that the CDC was determined not to take the Incline Village outbreak seriously, not to investigate it properly, and to assume all ME/CFS, not just that which occurred in that outbreak, was hysteria/psychosomatic and therefore not worthy of biomedical investigation.

 

[duncan]

But that has not happened. Rather than trashing ME it is at the front of the consensus name, at least in all international research circles, and also in the UK health care system.

This is an important step in the right direction, but I'd suggest more political than anything else. Hard fought for, though, yes.

We now have a situation where the term ME/CFS is widely preferred and the combination is an explicit acknowledgement that both terms have some problems but also some advantages. What is the point of dragging up an old argument that polarises patients and doctors when we have an agreement in good faith?

Perhaps a different way to view her reporting is it informs patients. BTW, what agreement? As for good faith...

There are still some psychiatrists who would like to believe in chronic fatigue, just as there are a few physicians who want to believe in mystery viruses and neuroinflammation

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?

If the international research community now has a reasonably clear focus on what the clinical problem really is

Does it? Clearly, some get it, but are you suggesting the broad international research community has a grip on the clinical problems presented by pwME? That has not been my experience, but I could be the exception.

 

[duncan]

but having just read this shorter book by Hillary Johnson, I have criticised it for assumptions made about aetiology and pathophysiology of ME/CFS which I think are not helpful to the cause of ME/CFS understanding and research.

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.