New Video: ME/CFS - A Brief History - The Lost Decades

[Spindrome]

Experts, MPs & patients discuss the impact of Psychiatry. Renaming & reframing the illness, the flawed research, the harm & the waste of time/money spent of behavioural studies that have failed to show any benefit.

 

[Rufous McKinney]

Curious if folks veiw the history above as mostly focused on what happened in the UK?

It seems like in the US, the issue is more the history of being entirely ignored, as opposed to being sent to clinics where somebody recommends or overseas a treatment plan like GET and CBT.

Nobody tells US patients to receive GET or CBT. Or do they? From what I can tell, Kaiser was the only major insurer who promoted GET and CBT.

 

[Spindrome]

I’m made it and am in the UK so it’s from a UK perspective. But GET and Cbt were used in the states from what I’ve heard until they were dropped by the cdc in 2017 but it is still recommended as the cdc did not promote the change. And they are used in Europe and Australia.

 

[Rufous McKinney]

And they are used in Europe and Australia.

Yes...from what I can tell, Australia and the Scandavian countries at least, seem to be following this.

The US experience is simply so different, because we occupy a type of medical chaos. So I pay more than $1000 a month for medical coverage and there was more information about COVID-19 on the sign at the bank.

I tried pretty hard to figure out how my Insurance Company views this illness, and I got nowhere. They won't cover a single RX.

1992- I think I have Mononucelosus, AGAIN . (30 years after having it four times)). Go to doctor. Tests nothing, says I seem stressed and should take a yoga class. I was diagnosed with Mono on four other occassions, but now I have this real insurance and there is diagnosis nothing.

I received a real diagnosis in 2014. The doctor jumped up and down with excitement.

How: odd! So at least now, I have one doctor who- gets this. He can't fix it, but he gets it.

 

[Spindrome]

Good to have a doctor that gets it. It’s rare.

 

[Diwi9]

@Rufous McKinney - Mayo still promotes CBT and GET. This is from its website:

The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.

• Cognitive training. Talking with a counselor can help you figure out options to work around some of the limitations that chronic fatigue syndrome imposes on you. Feeling more in control of your life can improve your outlook dramatically.
• Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen.

 

[Rufous McKinney]

@Rufous McKinney - Mayo still promotes CBT and GET. This is from its website:

ridiculous.

This same type stuff was on a web site for Kaiser Permanente and if I followed all that correctly, ONE referral doctor realized the mistake for some patients in one geographic area. (the mistake that they need ME CFS specialists and not GET or CBT).