Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/cfs 2017, Goudsmit

dave30th said:
My assumption would be that it's a natural concept that some or many people would tend to arrive at by trial and error on their own
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That's basically what the deal was back in the early 1980s - what to do about ME was a 'Wild West' situation rather than everything written in stone. The only 'criteria' was the Ramsay definition, none of the later definitions/criteria existed, NICE and their Guidelines didn't exist. Hard to imagine nowadays, but useless 'multidisciplinary teams' and 'fatigue clinics' for ME didn't exist then. But somebody by the time I got ME in 1983 had already arrived at the realisation that ME-specific pacing was something that made a notable difference, and it was being recommended in the news and in leaflets put out by ME support groups (no internet back then). It didn't come from psychiatrists, psychologists, therapists, etc, just the general news. It was all very informal.
 
dave30th said:
My assumption would be that it's a natural concept that some or many people would tend to arrive at by trial and error on their own, and so it isn't surprising to me if multiple people are credited as the first, because they all might have been the first in their areas or in their networks. I would doubt it has a single point of origin as applied to this illness. But I could be missing something.
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In the early 80s ME research had a resurgence with the likes of Darrel Ho Yen, Dr Eleanor Bell and the Behans showing it was a disease that did not just happen in epidemics. ME was described rather than defined which I think was the usual at the time.

When the BPS people suddenly took over, the gentle days of people talking to each other with an assurance we all had the same disease were over and we were at war. Things may have been going on in the background but that was how I felt about my local group and the ME Association.

There had been a general agreement that the best way to cope with the disease was to rest as necessary and never push yourself if you could avoid it. Tasks should be broken down, rest before and after anything you had to do, that sort of thing. It was not a treatment just common sense advice, though it was a revelation to me. When it needed a name it was called "pacing yourself".

When it was taken over by the BPS and suddenly had formal rules and goals it was horrifying and not at all what the concept was as used by people with ME.

The problem with naming symptoms and other concepts continues to this day and I am not at all sure it is not deliberate. At the very least, patients try to put their experience into words, the BPS adopt them and use them to mean something different which usually trivialises the original meaning or takes away any sense of uniqueness all to back up their thesis that ME is just a dot on a fatigue scale.

PEM annoys me the most. It is a term we use to mean something that defines ME because it does not happen in any other disease. Like the spots of chicken pox make it identifiable, so does the exertion problems in ME. Instead of putting enough effort into finding what is happening, refining what it is and trying to find a treatment there are lots of papers saying it is found in this disease and that disease so the term and thus the symptom is being diluted.

If all spots were defined as marks on the skin it would have become impossible to distinguish chicken pox and meningitis so the disease organisms would not have been found.
 
Sorry to necro this thread, I just found out the name of the Australian man I mentioned in one of my posts on the previous page who claims he invented pacing as a treatment for ME/CFS back in the 1970s-early 80s and that the idea was stolen from him without giving him the credit:



For those who can't see Twitter, the tweet says:
Max Banfield
@Maxm44444

#AustralianStory Hi Leigh Sales, I am the developer of the only successful method for treating chronic fatigue syndrome (ME/CFS) and Long Covid, and the inventor of the modern standing computer desk design which is now a $6billion/year industry. Would you like to interview me?
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And he attaches an image of a flyer about an election candidate. If you can't see it, the text begins with:
Olivia Sawas
Labor Party Candidate For Newland ln the South Australian State Elections in 2022

As your Labor Party Candidate for Newland in the next South Australian State Elections I have made it my task to learn as much as l can about the members of our community, and on one occasion I had the pleasure of visiting the home of Max Banfield in Modbury. He showed me an extensive display of his research papers and books and then presented a copy of Adelaide “News" articles from 1982-3 which reported his world first success in a project about chronic fatigue which others now call PACING, and explained that it is now regarded as the best treatment for The Chronic Fatigue Syndrome according to patient surveys.
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So that's a bit more of the history of how far back pacing was being used for ME.
 
Andy said:
He'll randomly post from time to time on social media posts repeating his claim to have invented pacing - in fact his last one was yesterday.
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Yes, it was a new tweet of his that led me to that older one! He often tweets about his having invented pacing (and in this case, standing work desks too) on various ME-discussion Twitter threads. I feel bad for him that he feels he invented it, but TBH it's something most patients (myself included) came up with ourselves spontaneously back then just through sheer trial & error experience - before the CBT/GET brigade came along and pushed patients into the exact opposite of what comes naturally, making them worse.
 
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