Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

[Mij]

And I know you're all unwell but I don't know how it will feel to see brain retraining get increasing attention and it concerns me. I understand why you are so determined to hate mind-body medicine but in this case, you have got things wrong. I know you want science to back it up but trials take time. Even the ones we have in the pipeline won't satisfy you as the bias in this community is so strong.

No, we are not "unwell", we are disabled, some have been severely ill/bedbound for decades, many have died from ME complications. So educate yourself and try to learn about the experiences of pwME because this is what this great supportive community is all about.

 

[BrokenBeaktheBrave]

The Revolutionary Communist Party used to drum it in, I think I even recall Fiona saying it “if you’re not for us, you’re against us” and I think sometimes that has shaped my attitude, even today.

Which Fiona is that? Because as soon as I saw this post I thought of a particular Fiona too.

 

[Mij]

I don't think you can see this as anything more than PG being a fly in your ointment.

In Canada, we refer to this as a thorn in our ass. He is actually trying to influence scientists in Canada.

 

[Hoopoe]

The absurdity of the claim can be seen from the fact that such a miracle treatment would make anyone that could prove it rich and famous. The better a treatment works, the easier it becomes to produce reliable evidence of the fact that it works. This miracle treatment is also so simple and inexpensive that there are no significant barriers to clinical trials. Yet there is no reliable evidence.

As time goes on, to maintain their faith, the believers must construct increasingly absurd explanations for the lack of reliable evidence. For example the absurd idea that patients are intimidating the medical profession and able to suppress this miracle treatment. This assumes the form of a typical conspiracy idea.

And one can see from all this that contrary to what is claimed, the people believing in this treatment are not healthy. I don't know what is wrong with them but healthy people do not act this way, or the way Garner is acting.

In my experience this behaviour is exhibited by people who have an illness that they aren't ready to acknowledge, don't know how to face or manage.

 

[Peter T]

What we do have is patients recovering.

No one is denying some people recover. Though we lack good data, one study suggested some 6% of people with ME recover completely. Further anecdotally, a lot of people with ME/CFS go through phases of trying any and every intervention being marketed, so then adding on the dramatic increase in people with ME/CFS since the pandemic, it would be surprising if there are not a fair number out there who believe they have recovered because of a chronological association with one of the many psychological or brain training interventions on the basis of chance alone.

This is why you do not treat on the basis of anecdote or use such evidence to establish health policy. Anecdotes have a role in directing people towards possible approaches, but science then has further steps including systematic case studies, survey data and then experimental trial data, the gold standard being controlled trials that are either blinded or if unblinded use objective outcomes.

Prof Garner’s much shared personal anecdote does not even rise to the level of a case study nor did he formally undertake any of the programmes he now appears to be advocating. Further he can not but know in medicine anecdotes of harm should always given considerably more weighting than reports of benefit. We have massive amounts of survey data indicating the majority of those undertaking psycho behavioural interventions report either no benefit or active harm, with only much smaller numbers reporting benefit. So surely it is profoundly unethical to advocate an approach that has a much higher chance of harming than benefiting on the basis of anecdote alone.

ME/CFS has an embarrassment of people claiming their preferred intervention has cured them, some devoting considerable energy and time to marketing that intervention. Most people with ME/CFS are regularly given unsolicited advice relating to unevidenced interventions, so without trials why should we credit any one over any other. If we can not see the evidence why should we credit brain training over LP, over fad diets, over replacing dental amalgam with gold or over the most out there recommended to me exorcism?

 

[MrMagoo]

I agree they are thin on the ground. Most would be reluctant to do a trial on M.E these days is the truth. What we do have is patients recovering. That is one of the points I'd like you to understand rather than dismissing it as meaningless. Patients recover and do so in large numbers, they just keep it quiet as they don't want to be attacked. That is a problem that needs deep reflection here.


I agree and that is not the point I was trying to make. I don't think you grasp the fact that by posting these kinds of threads mocking him and repeatedly attacking his character, you are stunting opportunities for your community. Either because researchers don't want to work in this area or because patients recovering don't want to make themselves known and share what helped them, for fear of also being ridiculed. You don't have to listen to me, but I wanted to at least share the impact from my perspective.


There are thousands. There are these secret groups. That is not going to change for now based on the fact recovering patients fear these more 'activist' spaces where people seem to be so unkind and invalidating. Is it right that this work is all happening in secret? I can't answer that, but it's what is happening. Most seem to just want to get on with their lives once they get better given M.E is so traumatic. You may want good clinical trial evidence. I do too, but in the absence of that, you're being told severe sufferers are recovering this way. I've met some of them in person and some online and they were ill for decades in some cases and housebound etc. If I was you I'd have curiousity about that but I'm not you.

You have a right to your feelings. I'm not here to persuade you it's the answer, I'm trying to nudge you as best I can to look at the reality of the brain retraining situation as it stands.

I know a fair amount about brain retraining and I have only come across one instance of people being told they aren't using the correct method to recover. This is one of those claims that is easy to bandy around but in reality no one is saying it is peoples' fault if it doesn't work for you. Be careful of repeating Chinese whispers that are baseless.

The entire M.E and LC community rightly wants their subjective accounts of their symptoms to be believed. All pain, all fatigue, many neurological symptoms are only subjective and dynamic. I appreciate there are things like heart rate measures showing POTS, but if you want your subjective symptoms to be taken seriously then you also need to appreciate research has a right to take the subjective report of symptoms seriously too. If a patient told me they were in severe pain and had severe PEM, I wouldn't tell them they didn't because they have no objective proof. I would take their report as factual.

I don't understand why you would want to argue that patients reporting improvements in trials that run for weeks or months shouldn't carry any weight when it risks people not believing how unwell some of you are. And yes, I appreciate some people can measure time in bed, steps walked, etc but they are still falsifiable and subjective, in reality. The only way of understanding M.E, both level of illness and level of improvement or decline is subjective self-report. The CPET isn't valid, based on current research. It is also questionable ethically, if participants are scared of going through it. Many recovering patients I've spoken to say they wouldn't have wanted to do it when still ill in case of being pushed into a long lasting crash by it.

Who is being offered a CPET?
How many pwME have ever had to turn down the offer of a CPET?

Many people with ME/CFS do not want to be pushed into brain training as they are afraid they will be encouraged into a long-lasting crash by it and that it won’t work, so it’s questionable ethically, if people are scared by it. Brain training isn’t valid, based on current research.

Many people I’ve spoken to are skeptical about brain training. I also have lots of friends who like me, in fact I have over 600 on Facebook. I even have friends who don’t identify as male or female because they’re non-binary.

This is fun.