Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I'm very interested in your 'intensive resting' though. What's all that about?
That's the point Astroctye,
You are getting psychological support from Barts while you "wait for a cure" and at the same time the same clinic is being run by someone (co-run) who designed and produced PACE.
It's a pity that you could not find somewhere else to get your emotional support.
At the same time other patients all over the UK are trying experimental treatments, fighting NICE, fund raising, encouraging good research and fighting against BARTS and the PACE trial.
You may have a long wait for a cure.
Janice Main for example.
It's one thing for a shrink to say ME is real, but what's the point if he's not treating it like a real illness?
It's also been mentioned in the CBT advocated for ME/CFS that the shrink should not challenge the false illness belief directly, but still aim for the same goal (convincing you to try to do more than you think you can). Hopefully you lucked out and got a good therapist, but you might want to be careful that you don't get played.
Oh that's easy to answer...
If in doubt, then I rest.
Then I rest some more... Then I rest some more... Then I continue resting.
I rest physically, but personally I don't need to rest mentally so much.
Glad you saw those videos about CBT for "CFS" they sell to doctors for something ridiculous like 100 pounds. you might remember they (i believe it is Trudie Chalder in the video) called their tactic of not telling the patient that ME is just a fear of exercise to gain the trust of the patient and then subtly get them to exercise, the "Trojan horse" tactic.
What you are doing so far sounds like the benign/helpful CBT that is used in other diseases, so great. Glad you are aware of that Trojan horse attack they are probably going to use on you. Keep us updated how it goes. If they don't end up using it, that would be great news indeed! Very glad you are getting some effective help so far!
Bob, there are other London hospitals that offer CBT to ME patients but aren't run by Peter White. Janice Main for example.
I'm not "waiting for a cure" I'm actively trying things, raising money, working on projects. I'm very grateful that I have tried some of the drugs I'm on. Peter White through NICE would want to stop that. If I need support I'll go elsewhere.
One could be at Barts and at the same time be actively collecting information and working to expose Barts. Other brave patients have.