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

If only there was such a thing for ME.

The London criteria is flawed because it excludes those of us who's illness does not fluctuate.

 

Myalgic Encephalomyelitis (ME). Criteria and clinical guidelines 2014.
http://web.archive.org/web/20150923181011/http://www.axfordsabode.org.uk/me/mecrit2014.htm

an interesting read.

 

and yet the MEA splits the two ie energy management, pacing, implying they are different, which only adds to the confusion.
https://www.s4me.info/threads/pacin...updated-january-2020.13320/page-7#post-470888

 

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.

 

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.

 

This

 

And the opposite is also true: had everything else been equal, but with the addition of some mark somewhere that is unique and unmistakable, everything would have happened differently. Even if it was simply a benign side-effect. It's all about social validation, about receiving the blessing that it's OK to care about this and work on it.

 

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:

https://twitter.com/user/status/1630005798347902976


For those who can't see Twitter, the tweet says:

And he attaches an image of a flyer about an election candidate. If you can't see it, the text begins with:

So that's a bit more of the history of how far back pacing was being used for ME.

 

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.

 

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.

 

Yes, I do think claiming to have invented pacing is like claiming to have invented breathing. You kind of just have to do it to survive...