1/ Paul Garner seems to be describing some form of brain retraining in claiming that positive thinking cured him of ME. He's extrapolating hugely from his own, n=1 case to make claims that are deeply harmful to the ME community and that are ungrounded in evidence.
2/ The tricky thing, though, is that there's something to brain retraining. Many ME patients have benefited from it. The problem isn't the idea that brain retraining can be a useful tool; the problem is extrapolating that brain retraining solves the entire problem of ME.
3/ Plus, of course, that he made other egregious, hurtful statements about ME patients.
This is a scary thing to talk about, because the issues here are subtle, and Twitter is not a good forum for nuanced conversations. Nevertheless, I think it's important to try.
This is a scary thing to talk about, because the issues here are subtle, and Twitter is not a good forum for nuanced conversations. Nevertheless, I think it's important to try.
4/ Whenever a treatment helps someone with ME, it's tempting to think, "I'VE FOUND THE ANSWER! FOR EVERYONE!" But ME is deeply multifactorial, so this is never true.
5/ Jumping to that conclusion is especially pernicious with brain retraining, because it suggests that people who are still sick with ME have just failed to think positively or are lazy.
6/ And in the context of patients being locked up in psych wards, like @thane_black and Holger Klintenberg are now, plus psych explanations being used to justify lack of research, jumping to this conclusion is downright threatening to the #mecfs and #longCovid communities.
7/ But if we wipe out the notion that brain retraining is THE ANSWER, we can start thinking about why some patients find it helpful, sometimes. My understanding is that we can end up with "grooves" in our brains that are unhelpful and that manifest physical symptoms.
8/ Though not quite the same, it's a bit like Pavlov's dog: The sound of a bell precedes getting yummy food, so the brain learns that, and the sound of the bell alone starts a chain of physiological responses in expectation of the yummy food, including salivation.
9/ So bell -> food -> salivation becomes bell -> salivation -> food, and then bell -> salivation regardless of whether the food appears. The maxim is "Neurons that fire together, wire together."
10/ Another possible analogue is PTSD. The association that loud sound = danger is so deeply grooved into the brain that a whole cascade of physiological responses happen automatically to a loud sound (heart rate spikes, etc) even when you're no longer in a dangerous situation.
11/ So, it may be that in some—not all—ME patients, the association exertion -> physiological problem -> symptoms has gotten grooved into the brain, so that sx start occurring as soon as they exert themselves, sometimes even if the physiological problem no longer occurs.
12/ So a patient may be getting symptoms for multiple reasons. #1, because their body's energy production system isn't working correctly (or any other non-brain-wiring mechanism underlying post-exertional malaise). #2, their brain wiring is producing symptoms on its own.
13/ So AT THE RIGHT TIME, when your body has healed enough, something like brain retraining may be helpful in undoing the wiring that has resulted from all those experiences of exertion -> symptoms.
14/ But as long as reason #1 exists, brain retraining could hurt you. Pushing your body beyond what it can do will make you sicker. ME patients have experienced that over and over, as did Paul Garner. Learning how to pace from us may well have protected him.
15/ There's this bias in medicine that non-pharmaceutical interventions are inherently harmless. It's false, as is evident by the PACE trial. Brain retraining is also not free of risks.
16/ One serious risk is that you could push beyond your limits and harm yourself. Another risk is emotional -- you could blame yourself for not trying hard enough or not doing it right if it doesn't work, even though the reality may be that brain wiring isn't even your problem.
17/ Now, I also have to address the commercial brain retraining programs. Gupta and DNRS are the most well-known. Some patients have genuinely been helped by them, and if they help you, GREAT. Personally, I hate hate hate them, for many different reasons.
18/ They're a hodgepodge of techniques, so it's impossible to know which of them are helping when they help. But some of the techniques are ableist and some strike me as a very bad idea.
19/ I find the positive thinking stuff silly, preferring to embrace the full range of my thoughts and feelings w/o judgment or fear. I think ignoring symptoms is unwise. I treasure my connections to sick friends. It's possible to rewire the brain with none of those methods.
20/ Also, these programs make the same pernicious mistake, imagining they're addressing THE underlying cause for EVERYBODY. And that's just false.
If it were true, the PACE trial should have succeeded, since it also trained people to ignore their symptoms and think positively
If it were true, the PACE trial should have succeeded, since it also trained people to ignore their symptoms and think positively
21/ For myself, at one point in my illness, brain retraining did seem relevant. I developed my own techniques for it -- no positivity, no avoiding other patients, no denying symptoms, no tuning out my body. I describe what I did in bit.ly/through_the_sh….
22/ But I tried it again when I relapsed, and it didn't help. By then, my neck ligaments were too damaged and my brainstem too compressed. Brain wiring either wasn't my problem at all, or it was so minor in comparison to the rest that brain retraining couldn't do much.
23/ It's hard to wrap our heads around complex stories, but ME is multifactorial. In my case, the factors include viruses, mold exposure, MCAS, autoimmunity, connective tissue damage, brainstem compression from CCI & TC, and yes, at times, brain wiring issues, plus more.
24/ So the fact that brain retraining is a helpful tool for some people some of the time does NOT mean that that positive thinking is the cure for ME, that ME is psychological, or that the way to get better is to stop listening to our sick friends.
25/ Please, let's not pit our community against itself. We can defend ourselves against the deeply damaging claims of people like Paul Garner and the harmful aspects of commercial programs without denying the experiences of folks who have benefited from brain retraining.
26/ It's hard to acknowledge any value in an approach like brain retraining that borders on the psychological when psychological theories do us so much harm, endangering us every day and contributing to our abandonment and isolation.
27/ But I think that we'll be more effective in fighting against the truly damaging psychobabbling if we don't waste our energy and credibility by arguing against aspects of their arguments that may be legitimate. Including brain retraining -- sometimes, for some patients.
28/ Doing so doesn't give Paul Garner or anyone else the right to blame us for our own illness.
@usabilityliz, this thread was partly inspired by your comment to me.
@VladVexler, this thread is in part a response to your comment to me about brain retraining vs PACE.
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