Who said: don't bother testing patients?

[rvallee]

Wrong thread, lol -- this has to do with the Golden hour (month) thread where I'm talking about monitoring blood values from mid fall to midwinter. Sorry!

Still pretty relevant in a "don't bother testing patients" thread

 

[chrisb]

In the interest of balance, I suggest this one:

My conviction that the position taken by the authors can lead to better care rests upon two premises; first, that the general practitioner can be taught to recognise common mental disorders and, more importantly, that he or she can learn to treat such problems effectively. Happily research at Manchester, as well as elsewhere, has shown clearly that the diagnostic skills of the generalist can be improved by short training schemes. The benefits for patient care from this step alone are not inconsiderable; recognising the locus of the problem avoids resort to unnecessary, invasive and costly test procedures; it reduces the liklihood of fixating the patient in a somatising pattern by the fruitless pursuit of yet one more laboratory test.

Leon Eisenberg, Forward to Common Mental Disorders-a bio-social model. David Goldberg & Peter Huxley 1991

For anyone wondering why this might be thought relevant to ME, it is cited and heavily relied upon by Goldberg in his paper Psychiatric perspectives: an overview, TO Woods DP Goldberg, British Medical Bulletin(1991) vol 47 No 4 pp 908-918

Some might recall that that is the paper in which the only authority for the expressed views on abnormal illness behaviour is a socio-philosophical lecture by Eisenberg.

The compliment is repaid: Common Mental Disorders: a bio-social model is a major contribution to psychiatry and medicine. It is destined to become a classic. I wish I could claim credit for it. I shall have to content myself with the reflected glory of having been invited to write the Forward.

 

[JaimeS]

He was one of the authors of the Fukuda criteria, so he probably had a stake in clarifying that he'd developed a criteria for a 'real disease'.

But he says that ME is 'imaginary'. So does he mean some other criteria, or what?

Reading between the lines it seems Wessley wanted the criteria he had helped create (Fukuda) to be the most prominent one, and therefore was trying to specifically discredit the only other criteria in prominent use at the time: Ramsay.

Remember, this was a talk given in 1994, the debut of the Fukuda criteria. He had to have an argument ready regarding why it was so important to create this new criteria.

I know that he and Ramsay proponents had some serious arguments over the years. This could have been his sly way of saying "Ramsay's patients are delusional; mine, on the other hand, are really sick."

Let's assume a mildly more altruistic perspective (?!). If Ramsay patients already had a reputation for being mentally ill, rather than bother to challenge that, he could have taken the shortcut of labeling them "not real patients", extricating that association away from newly-diagnosed ones.

Possible? Probable? Definitely true because you were there?

 

[EzzieD]

Possible? Probable? Definitely true because you were there?

Having acquired ME in 1983, I was there in the days when ME was only Ramsay-definitioned and considered a physical illness, not mental. It was accepted as a post-viral state that some people got slapped with after having had one of a number of specific viruses such as Coxsackie, EBV, Brucellosis, a few others I can't remember now, and in my case it was a particularly severe form of flu going around at that time. I was lucky enough to recover by 1990, thanks to medical drugs reported in the news as being tried out on people with ME at the time with some success - the wonderful GP I had back then was willing to try these. (She even referred me to Dr Ramsay at the Royal Free, but it turned out he had retired by then - I did see a very good consultant there though, who unfortunately has also since retired.)

It was after I returned to working full time in the early 1990s and happy to be out of that nightmare, that I heard the first of the nightmare to come: I was working in a psychiatric unit and a consultant I was friendly with who knew I'd had ME said 'Did you hear? They finally found out what ME is!' Me: 'Wow, what is it, then?' Him: 'Oh, it's just depression.' Me: 'Er, huh? No, it's not depression.' Him: 'Yes, that's what it is, just depression.' Me: 'No it isn't, I've actually had it and can 100% assure you it is not depression.' Him: 'Yes, that's all it is.' At that point I had to walk away because I'd always had a fun and friendly working relationship with him and didn't want to get into an argument. And at the time I shrugged it off, because I no longer had the illness and wasn't following any further news on what was happening with ME.

And then fast-forward to 2005 when to my surprise I relapsed big-time (I hadn't known this was possible, I'd believed that once you recovered from ME, that was the end of it) and went looking for help. I fully thought that surely by now they will have ME all figured out and curable, so I would take whatever meds were necessary and get back to work. You will of course be able to imagine my shock when I learned that not only had things not progressed, they had gone backwards into some sort of medical dark ages. ME was now 'CFS' and the only required symptom was fatigue? WTH? And the sole 'treatment' consists of counselling to make you think you don't have an illness, and graded exercise?? Huh? I'd been doing a physically demanding job lugging equipment around all day and going to the gym twice a week, but I'm 'deconditioned'??? And 'fearful of exercise'? I felt like I'd awakened on another planet or in some dystopian future like that Woody Allen movie 'Sleeper'. (ETA: Or maybe even more pertinent, the movie 'Idiocracy'!)

So I wasn't 'there' when the hijacking of ME by a small group of UK psychs resulted in it being renamed CFS and reframed as just fatigue was going on - I guess that was a follow-on from when my colleague reported to me 'Oh, it's just depression'. But I sure got hit with the aftershock when I found myself thrown into what felt like Bizarro World when I relapsed.

 

[Lucibee]

'Oh, it's just depression'

I've just been delving into the archives (as it were) and came across just this thing. It couldn't be further from the truth, of course, so I'd love to know how just how this arose as a thing.

I've spent the day looking back over Wessely's archive - chasing references associated with the things he was publishing in the late 1980s - and I've learnt some very interesting things. The main thing is that our current methods of article tracking (in terms of who has cited what, and how debate evolves over a particular article) is highly flawed because of the way that certain journals cite their own references in correspondence or letters sections (by date and page number in text only - no equivalent citation in the reference list). Basically, anything cited in this way does not get picked up by PubMed, doesn't appear as "cited by", so the debate threads are effectively lost to history. I've always had an inkling that this was a problem - but it is so much worse in an internet-connected age in which we assume these refs should be automatically linked. Because they aren't.

Anyway, the upshot of this is that this explains why the views of Wessely have been effectively unopposed for decades, and how nonsense like "Oh, it's just depression" is allowed to spread unhindered.

I only got as far as reference 1 in the Wessely archive, because I came across this reference by Bowman et al. I made these notes:

Bowman et al also mentions Goldberg’s article on use of GHQ in clinical studies, in which he warns for caution in using it to diagnose psychiatric disorders because of a high false positive rate if neurological (or even acute medical) symptoms are involved:

“Questionnaires have been used many times to detect psychiatric illness in general medical settings, with most studies emphasising that a substantial proportion of people shown to have a psychiatric illness using a research interview had not always been thought to be "cases" by the clinicians who were providing care.1-3 The temptation for clinicians is to use screening questionnaires in too simplistic a way, assuming that those with scores above some arbitrary threshold are psychiatric cases and those below are not.. Unfortunately this cannot be done, nor can one assume that the proportion of people with high scores is the same as the probable prevalence of disorder in a particular population.”

He concludes that: “It is advisable to calculate an ROC curve to check that the threshold chosen is appropriate: in medical and neurological inpatients, for example, the threshold may have to be raised as high as 9/10 on the General Health Questionnaire-28 to take account of symptoms and social dysfunction produced by medical illness.”

This indicates that the early findings of co-morbid depression are spurious and misleading. And it's yet another problem with using subjective questionnaires in the diagnosis of complex conditions. Other studies also commented on this at the time, including Dowsett and Prasher, and backed it up with objective evidence. That we are still here 30 years later is testament to failure of correspondence sections to act as a viable forum for academic debate. However, Wessely et al have found journals to be an excellent way to spread their nonsense about ME by capitalising on this.

ETA: minor corrections.

ETA2: Just to clarify, Wessely never said "it's just depression" either - but he did use the apparent increased prevalence of depression-like symptoms to push his affective disorder theories.

ETA3: Forgot to mention which SW article it was:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2545306/

 

[JaimeS]

This indicates that the early findings of co-morbid depression are spurious and misleading. And it's yet another problem with using subjective questionnaires in the diagnosis of complex conditions.

We've mentioned elsewhere that SF-36 is pretty egregious this way. There are a number of questions that, were one being explicitly truthful, would ping for both depression and physical debility. I took an SF-36 or something like it when I was doing my neuropsych testing, and there were questions like, "do you have trouble getting out of bed in the morning" and "do you believe you are more likely to be ill than others".

Er, what if those align with objective reality?

I was there in the days when ME was only Ramsay-definitioned and considered a physical illness

I appreciate the insight, @EzzieD, and I've heard the same from a very small number of other pwME. But when you hear it from one or two you think maybe they got a good doctor or maybe they had a better experience because they lived near where Ramsay had the most influence... good to hear from others on this, too.

 

[JaimeS]

There goes that theory! Thanks for your help dismantling it.

My experiences with ME start with my mom's, and we were in the states and it was the 1990s! All I know about Ramsay is what I've read, much of which was also written in the 1990s or later.

Now:

I do still think that the two criteria he's contrasting are Ramsay's and his. His talk of "no viruses were found" and @EzzieD 's assertion that Ramsay was seen as definitively post-viral would go along with this. Agreed?

So the takedown is because...? He's trying to promote the Fukuda criteria in the UK because he was part of it?

Can he really have bought that "no viruses found" means there are no viruses? In 1994?

 

[Lucibee]

Can he really have bought that "no viruses found" means there are no viruses? In 1994?

Which ref is this @JaimeS ?

 

[EzzieD]

'Oh, it's just depression'

I've just been delving into the archives (as it were) and came across just this thing. It couldn't be further from the truth, of course, so I'd love to know how just how this arose as a thing.

I've spent the day looking back over Wessely's archive - chasing references associated with the things he was publishing in the late 1980s ...

Anyway, the upshot of this is that this explains why the views of Wessely have been effectively unopposed for decades, and how nonsense like "Oh, it's just depression" is allowed to spread unhindered./

When that consultant said that to me, he told me I could go look up the paper or article in which that claim was made in our medical library, where we had Medline or whatever the primitive computerised journal database was called back then. I read the paper, dismissed it as a load of hooey, and went on my way. It's possible the author was Wessely but unfortunately can not remember for sure because the name wouldn't have meant anything to me at the time, and I promptly forgot it. It certainly had his very-sure-of-himself style, though.

I appreciate the insight, @EzzieD, and I've heard the same from a very small number of other pwME. But when you hear it from one or two you think maybe they got a good doctor or maybe they had a better experience because they lived near where Ramsay had the most influence... good to hear from others on this, too.

Basically it was all over the news at the time, at least where I lived (London), that there was this horrible post-viral thing going on and that it was a real physical condition. Some doctors did think the condition didn't really exist but those who did, acknowledged that it was physical and thought it seemed to involve some sort of immune dysfunction subsequent to viral infection. A few thought it might be a retrovirus, a few thought there was a problem with blood flow to the brain, and there were some other theories. But AFAIK, nobody was claiming a psychological etiology back then.

I had several very bad doctors to begin with, had to change GPs three times to get the good one mentioned in my last post. I discussed this strange new ME thing with her and she was actually interested and willing to help me. That was back in the good old days when NICE didn't exist and GPs were allowed to think for themselves and could do what they liked with their own budget. Hence I was able to get what I later discovered was quite expensive meds for the ME, because she was willing to try it and I guess she had enough of that year's budget to experiment with. Very sad that that scenario will never happen nowadays, at least not on the NHS.

So the takedown is because...? He's trying to promote the Fukuda criteria in the UK because he was part of it?

That sounds very likely!

 

[JaimeS]

Which ref is this @JaimeS ?

From my post waaaaay back here: https://www.s4me.info/threads/who-said-dont-bother-testing-patients.6532/page-5#post-119654

Putting the link because honestly -- there's a lot just before and just after that's somewhat pertinent. But most to the point:

• In an initial population survey, Wessley looked at data from 15,000 people, 38 of whom said they had ME. Most did not fit the criteria for ME.
• In a follow-up study of 2,400 patients for 6 months, Wessley found:
  • Half had a viral illness over this period of time
  • 196 had developed chronic fatigue -- which, shockingly, Wessley differentiates from CFS or ME
  • 30 patients had 'true' CFS (again, what does he mean by this -- which criteria?)
  • One of the patients had developed CFS post-virally

The implicit conclusion is that Fukuda CFS cannot (or as a rule, does not) develop after a flu-like illness. According to his study, it's 1/30 individuals with CFS (Fukuda) started with a flu-like illness.

 

[JaimeS]

Started as an edit to my previous post before I realized it was going to contain too much new information.

This might have led to Wessley believing that the whole "starts with a flu-like illness" thing was a sham -- but it's not at all sensible. There's so much that's weird about this that it requires some dissection.

________________________________________________________________

He says that half of people in the survey had the flu within that six month period.

Yet somehow, only one of thirty people who developed CFS had the flu in that same time period?

That's astronomically unlikely.

Okay, you may be thinking, maybe what he means is that some of them DID get the flu, it just wasn't what gave them CFS.

But how could we possibly judge that? Not everyone has struck-by-lightning ME. I personally had numerous health events from which I never fully recovered before I met CCC criteria that finally diagnosed me. That was years later. Many other pwME have the same story. What was the first thing I remember 'going wrong' and 'never quite recovering all the way' from?

Well, it was probably an enterovirus. In 2011.

I was diagnosed in 2014.

I hope it's needless to say that slow-onset doesn't somehow invalidate rapid onset, or vice-versa.

Ramsay seems to refer mostly or solely to rapid onset, and that's fine.

Now, with that most obvious flaw in reasoning out of the way, let's hit up a few others.

________________________________________________________________

Reporting is the other big issue. How do we know half had a virus? I should think that number should be higher. Where I worked, the majority of people had two colds a year. I'm sure there are outliers, but the CDC confirms that 3 per year is average. So in a six month period, the average person has experienced 1.5 viral infections that they notice.

So the discrepancy makes me wonder how they found out.

Was it self-reporting? If so, how often did they ask? Just at the end of the six month period? Geez.

If it was from the doctor, then we're suddenly talking about only those viral-type infections severe enough to make you go and get checked. And those can get pretty bad before some of us go. I had a 102F fever the other day and didn't bother because that's still not considered 'severe'.

Both of these present with pretty significant issues, epi-wise.

________________________________________________________________

And now onto biomedical reality, away from questions of epidemiology altogether.

Even if they took blood samples and tested, that is no guarantee of lack of viral activity. Even today we cannot always spot viruses due to location (inside of cells; somewhat constrained to particular organs or organ systems) or viruses we don't know (we look for DNA viruses but it's an RNA virus; we have to know which virus we're looking for and there are sooo many undiscovered viruses). In 1990, that goes double.

So I'm not sure how he was ever convinced that his study proved that there was no such thing as post-viral Ramsay and everyone was making it up. I mean, perhaps he didn't know what he didn't know, but it still seems absolutely inexplicable that someone with that level of education can be that blinkered.

 

[Lucibee]

There are lots of problems with those "epidemiological" studies that he was involved with - I need to remind myself again. (I might be some time. )

 

[lansbergen]

He claims al kind of stupid conclusions. I gave up a long time ago to take it serieus

 

[JaimeS]

He claims al kind of stupid conclusions. I gave up a long time ago to take it serieus

Valuable to try and pick apart how we got here. At least for me.

We keep repeating a lot of the same problems. Those who don't study history and all...

This might be in Ostler's Web someplace, but I left my giant copy at home when I moved to CA.

 

[Snow Leopard]

And that's interesting -- and not something I've ever seen discussed.

I have discussed the directionality of symptoms before, namely cognitive effort leads to cognitive PEM, whereas a sufficient amount of physical exercise leads to both physical "crash" and cognitive "crash".

The sensory issues only come when everything is really severe - only when the brain is overwhelmed with everything else not working as it should.

But others claim they get severe physical symptoms in the rest of their body from cognitive effort (eg an exam) - the only physical symptoms (in the rest of my body) I get related to cognitive work are simply due to being in the same position for a long period of time. If I am able to move/relax I don't get those symptoms.

Lastly, "central" doesn't have to be primarily related to the CNS - central issues can be due to blood related issues.

If you have issues related to the weather, then this also suggests blood volume/pressure or baroreceptor issues

 

[JaimeS]

The sensory issues only come when everything is really severe - only when the brain is overwhelmed with everything else not working as it should.

Yes! Saaame. I've only had sensory symptoms with SEVERE overwhelm causing the crash. Like... someone playing thumping music without stopping, for hours at a time with me too physically crashed to feel I could leave for anything less than an emergency.

Lastly, "central" doesn't have to be primarily related to the CNS - central issues can be due to blood related issues.

You're right!

For anyone who's interested in learning more about that, there is an awesome article called Fatigue in neurological disorders by Abhijit Chaudhuri & Peter O Behan (2004) that goes into great depth regarding differential diagnosis of central fatigue. It includes "CFS" but gets a lot right. I've definitely seen Behan's name on ME stuff before.

If you have issues related to the weather, then this also suggests blood volume/pressure or baroreceptor issues

True, although poor control of blood volume could be seen as autonomic, which is still NS... and endocrine.

 

[lansbergen]

I've definitely seen Behan's name on ME stuff before

He was good

 

[Sly Saint]

I've definitely seen Behan's name on ME stuff before.

he diagnosed @Nasim Marie Jafry

 

[yME]

Most of the above is beyond me, but the idea of weather pressure is interesting to me. When I had mild / moderate I still scuba dived - probably when I should not have been. But there was an energy release if I lay still at 10 m depth. This also occurred on long flights. People describe being in the sun as positive, but perhaps it’s the flights pressure change that’s a trigger? MS sufferes also visit pressure chambers for relief. If taken forward to the OMF blood deformation findings which I rationalise thus:
Liquid ie blood is not compressible but any gas in the cell is? So gas is causing deformation and therefore affected by external pressure. Maybe thats off the mark tho. Divers experience nitrogen buildup ‘bends’ in the blood. But does that mean in the cells or bubbles in the blood stream? As the diver rises the gas comes out causing brain and paralysis defects.

The blood deformation is only another finding of course, but Ramsay did suggest there was a seasonal aspect in 1955. High summer pressure?


I wonder how many sufferers have never been on a pressurised flight pre onset? Explosion of ME in 1980s post increase in flying? Certainly not a link to causation, but worth debate.

Tin foil hat on and helmet over this post, but it’s the odd that maybe the key to this illness. After all ‘normal’ science has not cracked it yet.

 

[JaimeS]

Most of the above is beyond me, but the idea of weather pressure is interesting to me.

Mine definitely varies with weather, pressure, season. That reminds me, that Golden Hour post needs all the data added. Graphs, charts, tables... it's a veritable case study by now.