Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

@dundrum

I'll wheel out my family's personal experience once again. Members who have read this already can just scroll on.

Some 12 years ago now, I and my two children had what we assume was a gastric flu. We all assumed that it would pass quickly enough, as previous illnesses had. But we all started developing strange symptoms. One of us would say, 'I keep waking up with numb limbs', or some other odd thing and the rest of us would say 'yes, me too!'. We were really exhausted, had headaches, needed to lie down a lot. My son got so exhausted on the football field that he had to stop, he could hardly walk from the field and he lost vision in one eye for 20 minutes. He got joint pain.

At that time, we had all had nice interesting lives, were doing well and looking forward to the future. My children liked school, had friends. We weren't over-stressed, none of us had any history of mental illness and we were all active.

The children struggled to get to school. I struggled to keep working. My daughter continued on with school, she continued to try to keep on with her sport. She was captain on one team, a participant in several others, she competed nationally in one. But, she would come home and go straight to bed and fall asleep. My son tried too, but he couldn't keep going to school, he couldn't walk up the stairs to class, he couldn't think well sitting up for hours at a time, the noise in the classrooms was exhausting.

Eventually we were diagnosed as having ME/CFS, all in one appointment, and the kind infectious diseases specialist said that he was sorry, he couldn't suggest anything but he hoped we would get better. There were other doctors, the paediatrician who also diagnosed my children as having CFS but clearly thought we were all hypochondriacs, and the rheumatologist where the consultation lasted 5 minutes and I went in sat in the car and cried.

My daughter did recover over about two years. I don't think she is completely well now, but she has a very good life. My son did not recover and still has ME/CFS (he also has a pretty good life now, even so). Never once was he afraid of exercise.

One year, he did school work in his bed, or lying in a sleeping bag on the kitchen floor, but he went to football practice once a week, and played a quarter of a game on Saturdays. After trying to go back to school and getting sicker and sicker, he played a game of indoor football and ended up sleeping 20 hours a day for month, with the rest of the awake time spent mostly lying in bed.

Years later, much to my concern, he took up boxing, convinced he just needed to exercise his way to fitness. It didn't work. He still plays the occasional game of football, it still requires him to rest in bed afterwards.

I also assumed I could exercise my way back to fitness in those early years. I tried yoga, which I had previously done, but it was wiping me out. I tried individual pilates classes, 30 minutes twice a week, with a 15 minute walk either way - pilates was also something I had done regularly in the past. But instead, I got worse and worse. It was talking me three days to recover. The pilates people could not understand it and neither could I.

So, when you suggest that fear of exercise or activity or anything is the cause of ME/CFS, that makes me think you don't understand this illness at all. If people develop a fear of exercise as a consequence of repeatedly getting slammed with PEM, that would be entirely understandable.

However, as others have pointed out, for most people they don't even have that consequential fear. In the same way as you don't fear the hot element on the stove and use it to cook your potatoes on but know not to put your hand on it, I think almost everyone with ME/CFS values activity and engages in it to get things done to the greatest extent possible, but they eventually learn not to do stupid things that will damage them.

I don't think a partial/quantity dependent fear really works. e.g. to suggest that someone doesn't have a fear of gardening for an hour but does have a fear of gardening for two hours gets to be a bit nonsensical, don't you agree?

So, I find it both wrong and a bit offensive to be told that people with ME/CFS have a fear of exercise. Clearly some do not. Probably almost all do not. You may say, 'ah, but you don't actually know that you have a fear of exercise, but deep down you do'. But, that really is not consistent with the evidence.

And, there is no evidence that attempts to increase activity fixes anyone with ME/CFS. Check out the Magenta study. That one is also evidence of the harm you can do to someone, by suggesting that they could fix themselves if only they tried a bit harder.

So, please, when you are communicating with people with ME/CFS, bear in mind that we almost certainly do not have a fear of activity. And suggesting that we can fix ourselves by increasing activity can cause many harms, not least, psychological damage. If your version of brain retraining is based on correcting an activity phobia, then perhaps it is useful for someone, but it is not a cure for ME/CFS.

 

Illness beliefs and treatment outcome in chronic fatigue syndrome
1998, Deale, Chalder and Wessely
I'll make a thread for it if we don't have one. That's quite a blast from the past.


Edit:
Illness beliefs and treatment outcome in chronic fatigue syndrome, 1998, Deale, Chalder and Wessely

Apologies, my assumption was wrong. This study actually found that lots of participants assumed they had a physical disease, and it wasn't associated with a poorer outcome.

 

Symptom perceptions, illness beliefs and coping in chronic fatigue syndrome
Rona Moss-Morris, 2009
It's just hypothesising, and prejudiced arrogant hypothesising at that.

I'll make a thread for that one too, if we don't already have one, and add the links.
Edit: Symptom perceptions, illness beliefs and coping in chronic fatigue syndrome, 2009, Moss-Morris

 

How do you know that fear of exercise can prevent natural recovery?

Fear of exercise might prevent someone doing fitness exercises and getting physically fitter, but lots of people are very unfit and don't have ME/CFS, so being unfit isn't the cause of ME/CFS, so why would not exercising prevent someone recovering from ME/CFS?