Trial By Error: And Another Prebuttal…

I think that we sometimes forget - or it gets lost in all the other arguments - that people diagnosed with ME/CFS are largely I would suggest against GET and/or CBT because it has not worked for them. And this is despite (often) repeated and honest attempts to adhere to the regimen following the advice of NHS ME/CFS specialists and/or GPs/Consultants, even of family members or others who might have been influenced by the media, NICE, or as a result of 'common sense'. Exercise is the best medicine in many people's eyes, right?

People with ME/CFS are not refusing 'treatment' in vast numbers. I would suggest that the majority of patients diagnosed by the NHS will try their damnedest to follow the advice of their GP and/or ME/CFS specialist. And as I said, many of us have done so over many years and repeatedly. We all want to get better. But when you have found after honestly trying and persevering at something that it doesn't work, that is leads to relapse, or an increase in symptom severity, and worsening health, there comes a point where you just have to say no and discontinue. And that is a very hard decision to reach. It sure as heck is not easy.

So, I would suggest one the key arguments against the PACE trial etc. has been that patients on the whole just don't agree with the main findings, that in their own experience GET simply does not work and has been delivered inappropriately, and also that CBT has not produced the kind of results for their ME/CFS (excluding perhaps issues surrounding acceptance and coping); that the PACE trial and others have announced. Reading the headlines generated by that trial, I didn't need to know the science, I had my own experience telling me that something was wrong. That the claims made had to be wrong.

I also think there is some disconnect between the recommendation in NICE, for example, that patients should be assessed as individuals and their management advice tailored to suit their needs/abilities, and the actual advice provided by the NHS clinics in some/the majority of circumstances. One thing that was very clear from the patient surveys that have been conducted in the UK has been that people who consider themselves to have been severely affected before referral to a NHS specialist clinic (those who were mostly ambulatory*), were recommended graded exercise therapy and this then led to worsening symptoms and relapse. This is not something that NICE advise and is perhaps the clearest evidence that something is wrong at the clinical level. I suspect more is wrong, but that's the most obvious to me.

Russell

(*While the majority of NHS ME/CFS clinics do not offer home visits for the severely affected - meaning that these patients have to travel to the clinic if they want any care - a small number of clinics do visit patients at home.)

 

Taking your comment slightly out of context, but validly I think.

The very thing which convinced me back in 2016 that the PACE hypothesis was completely and utterly wrong, was my wife's own experiences of ME, and indirectly therefore my own also. I first met my wife in 1977, and know so very certainly that she always pushes herself well towards her limits, wherever those limits happen to be. Before she got ME she was always very active, and for sure was nowhere near any hint of being deconditioned. And when she went down with ME at the same time as recovering from a fairly minor operation, she was only off her feet one, two days at most ... after which she was getting about and pushing those limits again. She never ever got anywhere near being deconditioned, and being mild/moderate, still to this day pushes those limits to the best of her ability; she is just driven - always - to to so, and I admire her tremendously for that. She does pace sensibly (mostly!) though thank goodness.

So your comment just struck a chord Russell, that despite what these 'experts' so arrogantly believe, if they only just listened (with brains not just ears) to pwME, they might just learn something useful.

 

Sharing widely is not likely to get an article retracted and is likely to be counter-productive. Sharing with prominent people in authority who may be able to leverage a correction on the other hand can be helpful...

 

I concur. We don't want to share their article, that is their narrative.

We want to control the narrative, and the (our) narrative is not about David's reporting, it is about a small group of powerful BPSers making money and harming patients on fraudulent research - and they are lashing out again in an effort to protect their interests and further malign patients.

I'd be inclined to draw parallels with the current 'fraudulent research = reemergence of measles' story.

The other thing to keep in mind is the average attention span of the general public in a media soaked world. They read headlines - that is the nature of Twitter - clear concise compelling sound bytes are crucial.

I will probably ask the author of the article via twitter if they will be a guest on my podcast about medical error. The topic will be "How media perpetuates medical error, harm and death". And we can talk about their ethical responsibilities.

I highly doubt they will accept my invite, but the public invitation itself makes the narrative about medical harm, i.e. BPS 'treatment' of ME.

 

Huh? When the news of Sharpe trying to get articles retracted came out, those articles were then shared widely on social media in response (they were the Rehmeyer's piece in Stat and Lubet's one in The Conversation). What I've suggested is sharing accurate articles (such as the Stat and Conversation ones) widely instead of sharing this anticipated pro-BPS/PACE authors article, to use the increase in awareness to highlight stories that we want read.

 

Oh sorry, my mistake.

 

The point of this strategy is to control the narrative. By sharing and debating on social media - even though our points are strong - it gives the outside community the impression that there are two sides to this story - theirs and ours. So, Meaction UK wants to try out the strategy of no longer promoting this "debate" to social media prominence.

 

This sounds a brilliant idea. Control the narrative by allowing an opponent to say what they like, and say nothing in response. Has such strategic vision been seen since the days of the Maginot Line? Or is there a cunning plan?

 

Gets very tricky. On the one hand you feed the troll. On the other hand you give the troll the chance to say "There, you see - they have no answers!".

 

Its about strategy. What they are doing is using every weapon they have to impose their will on us and prevent dissent.

We need to counter that with effective responses. If an article gains no traction don't give it press because then it will fade into obscurity (prevent the Streisand effect). If it goes viral address it with vigor, show how biased it is and use it to give us more screen time and to make our well thought out points. There is much more we can also do, the prebuttal article is a good move because it may give them cold feet about publishing propaganda. Whoever thought of the PACE intimidation MEPedia article is incredibly wise.

The idea is we don't pick a strategy and assume it will work in all case scenarios because it simply won't. If we had such godly tools we would already have decimated the PACErs. We must tailor our responses to the circumstances at hand.

Like a finely played game of chess, you make moves based on your interests but also to counter the moves your adversary is making to get to ultimate victory.

 

the article is out:
https://www.s4me.info/threads/special-report-online-activists-are-silencing-us-scientists-say.8557

 

Here is the archived version: http://archive.today/lwDNQ

 

Kate Kelland of "Pushing limits can help chronic fatigue patients" fame. Sigh.

 

yes it's Kate!