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A lack of caution is how ACT UP finally got the NIH to fund HIV/AIDS research 30 years ago. We too should be united in anger and not afraid to (nonviolently) express that anger when appropriate.

In my opinion, ME/CFS needs a helluva lot more ACT UP, and a lot less calm deference towards those that do us harm. Silence = Death (or at least something at times resembling death). Edit: How about "Silence = A Living Death"

Received a 2 page written letter from the California Department of Managed Healthcare (DMHC) today, regarding the issue of Graded Exercise Therapy being prescribed for ME/CFS. They said: I heard from a reliable source that the California Department of Managed Healthcare was able to get...

In the United States, we still have similar desensitization thinking, but it's slowly changing. The Mayo Clinic website currently has this nonsense:

Begum's Wikipedia entry has been updated again. Now it's a "rare form of neurological chronic fatigue syndrome known as myalgic encephalomyelitis". What a mess.

Just an update on items currently pending: Request to Kaiser Permanente for ME/CFS specialist care - DENIED California Department of Managed Healthcare - Waiting for a response to my complaint that no health plan in California should be recommending GET for ME/CFS. - DENIED Medical Board of...

For myself, I have a lot in common with MS. I find very little in common with fibromyalgia or IBS. This might make an interesting poll.

"It is a complicated illness but the majority of children get bitter with specialist treatment." There, fixed it. :unsure:

First they tell you antidepressants are the key to your recovery. When that doesn't work, they tell you stimulants are the key to your recovery. When that doesn't work, they tell you CBT/GET is the key to your recovery. When that doesn't work, they tell you it's your fault for not recovering.

Have you ever called the National Multiple Sclerosis Society? In my experience, even when you tell them you have ME/CFS and not MS, they will still happily try to answer any questions and help connect you with services to the best of their ability. It's like a secret helpline for ME/CFS too, but...

If I demand better quality ME/CFS research, does that make me a perfectionist?

A decent undergraduate McMaster University student video about "chronic fatigue syndrome". It covers the PACE Trial and correctly concludes the results are unreliable. Worth a watch. The case study, of a fictitious person named "Hannah", is very good. Overall, quite good for YouTube. A few...

http://psychiatry-mentalhealth.pulsusconference.com/call-for-abstracts/child-and-adolescent-psychiatry

Chronic Fatigue Syndrome included in somatoform disorders. http://mps.ca/spring18/ Current Conceptualization and Assessment of Somatoform Disorders Spring Workshop Friday, May 4, 2018 Manitoba Psychological Society

Accredited US continuing education course for nurses. Course materials strongly promote CBT/GET. https://www.cheapnursingceus.com/ceu-courses/chronic-fatigue-syndrome.php Edit: Apparently the course above has been removed. There is now a "Chronic Fatigue Syndrome Diagnosis and Management in...

https://psychosomatic.conferenceseries.com/

The article claims that the procedure can stop MS progression for 5 years or so. It doesn't result in remission.

Healthwise's "Contact Us" webpage was broken, and their webmaster was grateful to me for letting her know about it. Once fixed, I sent Healthwise a link to the paper, asking them yet again to consider removing CBT/GET from their ME/CFS materials. Unsurprisingly, Healthwise didn't respond.

AfME sounds a bit like Healthwise. Acknowledging that PACE results are unreliable, but unwilling to completely let go of CBT/GET, citing anecdotal reports it can be helpful for a subgroup.

I wonder if any ME/CFS patients have tried this (not a recommendation).