ME/CFS research
@cfsresearch.bsky.social
Interested in research into ME/CFS/MECFS, FND and related conditions. https://medium.com/@cfs_research
also the most common factor in recovery stories, including my own.
November 28, 2025 at 9:18 PM
also the most common factor in recovery stories, including my own.
No, he doesn't say that positivity cured him. He says that reducing stress and worry cured him (i.e. removing negativity, not being positive). That's an important distinction. And yes, the science does show that stress is an important factor (and that is one of the few replicated findings). It's
November 28, 2025 at 9:18 PM
No, he doesn't say that positivity cured him. He says that reducing stress and worry cured him (i.e. removing negativity, not being positive). That's an important distinction. And yes, the science does show that stress is an important factor (and that is one of the few replicated findings). It's
(Referring to biopsychosocial factors and treatments in general).
November 28, 2025 at 9:16 PM
(Referring to biopsychosocial factors and treatments in general).
But we do have a large body of evidence in addition to lived experience from patients (and it is consistent with that evidence).
November 28, 2025 at 8:44 PM
But we do have a large body of evidence in addition to lived experience from patients (and it is consistent with that evidence).
Again, I'm not a proponent for "brain retraining", and Paul's story had no mention of it. Maybe you should watch the video, and also look at the replicated evidence.
November 28, 2025 at 6:31 PM
Again, I'm not a proponent for "brain retraining", and Paul's story had no mention of it. Maybe you should watch the video, and also look at the replicated evidence.
And neither Paul nor I are making any money out of this. You just seem to have something against recovered patients, which unfortunately seems to be quite common (and, to be frank, bizarre).
November 27, 2025 at 9:20 PM
And neither Paul nor I are making any money out of this. You just seem to have something against recovered patients, which unfortunately seems to be quite common (and, to be frank, bizarre).
I'm not sure who you're referring to here. I didn't do any "brain retraining" programme, and neither did Paul. We both recovered, and our illness and recovery are consistent with the evidence. Maybe you should read Paul's story (and mine) before spouting off?
November 27, 2025 at 9:19 PM
I'm not sure who you're referring to here. I didn't do any "brain retraining" programme, and neither did Paul. We both recovered, and our illness and recovery are consistent with the evidence. Maybe you should read Paul's story (and mine) before spouting off?
I think perhaps you haven't bothered reading anything I've posted, as I've never "pushed" brain retraining. (In fact quite the opposite). But who's interested in facts?!
November 27, 2025 at 4:45 PM
I think perhaps you haven't bothered reading anything I've posted, as I've never "pushed" brain retraining. (In fact quite the opposite). But who's interested in facts?!
impossible anyway).
November 27, 2025 at 4:44 PM
impossible anyway).
We don't need to prove it, but there is sufficient evidence out there. There was when I recovered 25 years ago, and there is more now. I recovered by looking at the evidence. Some people aren't interested, and that's fine. I'm just not going to waste my time trying to convince them (which is
November 27, 2025 at 4:44 PM
We don't need to prove it, but there is sufficient evidence out there. There was when I recovered 25 years ago, and there is more now. I recovered by looking at the evidence. Some people aren't interested, and that's fine. I'm just not going to waste my time trying to convince them (which is
The reality is that people are recovering by addressing the reasons for their illness, as Paul did, and I did. Youll never have the proof you need.
November 27, 2025 at 3:03 PM
The reality is that people are recovering by addressing the reasons for their illness, as Paul did, and I did. Youll never have the proof you need.
There are quite a lot of RCTs for CBT, both for ME/CFS and for longcovid. It's one of the few replicated findings.
November 27, 2025 at 4:06 AM
There are quite a lot of RCTs for CBT, both for ME/CFS and for longcovid. It's one of the few replicated findings.
Only biomedical studies.
November 19, 2025 at 12:37 AM
Only biomedical studies.
If you talk to patients who have recovered, you'll see that isn't generally the case. Quite often they were vehemently against brain retraining, or any notion of psychosocial involvement, until they decided to look into it. I've heard that many times.
November 17, 2025 at 12:33 AM
If you talk to patients who have recovered, you'll see that isn't generally the case. Quite often they were vehemently against brain retraining, or any notion of psychosocial involvement, until they decided to look into it. I've heard that many times.
It's good news, although I strongly suspect a lot of people won't like the results (see, e.g. the long covid RECOVER studies).
November 16, 2025 at 6:19 PM
It's good news, although I strongly suspect a lot of people won't like the results (see, e.g. the long covid RECOVER studies).
condition, the physical and mental aspects are just two different symptoms. The same seems to be the case for ME/CFS.
November 16, 2025 at 6:12 PM
condition, the physical and mental aspects are just two different symptoms. The same seems to be the case for ME/CFS.
I would say they are two sides of the same coin. During stressful periods, for example you might experience headaches, loss of appetite, diarrhea or mild immune suppression. The mental health issues tend to only occur at the more severe or chronic stage from what I can tell. It's not a mental health
November 16, 2025 at 6:12 PM
I would say they are two sides of the same coin. During stressful periods, for example you might experience headaches, loss of appetite, diarrhea or mild immune suppression. The mental health issues tend to only occur at the more severe or chronic stage from what I can tell. It's not a mental health
It's true that many official health services (NHS in particular) have either problematic or non-existent services. Most people I know didn't recover using CBT or GET. Coaches seem to have a better idea of how to help patients. It's difficult to understand the illness if you haven't experienced it.
November 16, 2025 at 6:09 PM
It's true that many official health services (NHS in particular) have either problematic or non-existent services. Most people I know didn't recover using CBT or GET. Coaches seem to have a better idea of how to help patients. It's difficult to understand the illness if you haven't experienced it.
Because I've heard them say it many times. A lot of patients are vehemently against anything that results in recovery unless it is purely biomedical. They accuse us of never having had ME. It doesn't really bother me. I just get on with the task of helping other patients who are interested.
November 16, 2025 at 6:09 PM
Because I've heard them say it many times. A lot of patients are vehemently against anything that results in recovery unless it is purely biomedical. They accuse us of never having had ME. It doesn't really bother me. I just get on with the task of helping other patients who are interested.
I didn't (as you know).
November 16, 2025 at 5:54 PM
I didn't (as you know).
The effect is d=0.48, which is a moderate effect size (from Malouff). Mental health is intimitely tied to physical health. I don't think anyone's going to "prove" that hypothesis any time soon, but most patients don't have time to wait before trying interventions based on the available evidence.
November 16, 2025 at 5:54 PM
The effect is d=0.48, which is a moderate effect size (from Malouff). Mental health is intimitely tied to physical health. I don't think anyone's going to "prove" that hypothesis any time soon, but most patients don't have time to wait before trying interventions based on the available evidence.
It's a start. Recovery is a long journey. Objective placebo is IMO a core part of recovery: that is, stress reduction, reduction in worry about body being damaged, hope of recovery, etc.
November 16, 2025 at 5:50 PM
It's a start. Recovery is a long journey. Objective placebo is IMO a core part of recovery: that is, stress reduction, reduction in worry about body being damaged, hope of recovery, etc.
I'm not sure which hypothesis in particular you are referring to. Effect sizes for CFS with CBT are similar to depression, according to Malouff's 2008 review.
November 16, 2025 at 5:31 PM
I'm not sure which hypothesis in particular you are referring to. Effect sizes for CFS with CBT are similar to depression, according to Malouff's 2008 review.