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Yes, certainly short term fluctuations too. But the overarching multiyear relapse/partial remit periods were very obvious to me long before I was diagnosed by a doctor with ME/CFS. The length of the relapses/partial remissions didn't seem to change over time, however. I don't know if this is a...

1-4 years of relapse followed by 1-4 years of partial remission. Until it become chronic without significant remissions after about 25 years.

Another huge thank you @dave30th. This is real hope for Kaiser Permaenente members with ME/CFS. There will be a huge physician cultural shift to accomplish. But this physician-led "bottom up" approach has the potential to change healthcare more rapidly than government ever could. I've seen...

If disabled people widely stop participating in social media, this is also a way to shut down our freedom of speech and freedom of assembly. We may need to create an online privacy and anonymity thread should this scheme come to pass.

Similar article we were discussing a couple weeks ago on the WiFi thread. On Disability and on Facebook? Uncle Sam Wants to Watch What You Post https://www.nytimes.com/2019/03/10/us/politics/social-security-disability-trump-facebook.html

Just as an aside, a few years back Kaiser Permanente had a class action lawsuit for refusing to provide behavioral therapy for autistic children. The settlement was up to $9 million to reimburse members for out-of-pocket expenses and to fund autism research...

Assessment tool predicts chronic fatigue syndrome six months after mono https://medicalxpress.com/news/2019-03-tool-chronic-fatigue-syndrome-months.html

"biological or psychiatric" is no longer a debate according to US health agencies. It's biological. I think the distinction is important, largely because patients with psychiatric conditions get referred to psychiatrists, and may be denied appropriate care by medical doctors (e.g. no...

One of the ironies not lost on me is that there is suddenly so much biomedical ME/CFS research, it's difficult for me as a patient to find the energy to participate in it all. I'm in a study this week (exercise), a different study next week (just a blood draw), and I'm supposed to call back in...

In a sense, yes. That is the Nov 2018 updated Healthwise ME/CFS web page. It is Healthwise's position on ME/CFS, but not Kaiser Permanente's official position. Healthwise is independent from Kaiser Permanente, but Kaiser Permanente uses Healthwise content on their website. Healthwise is a...

Dr. Olson is very aware I became ill following a viral infection more than 40 years ago. My focus is on trying to improve ME/CFS diagnosis, care and support to reduce patient suffering right now. But like you, I don't want the history of this illness forgotten either.

That is correct.

ME/CFS patients with Kaiser Permanente deserve much better than they have been offered in the past. They need real hope that their care will improve, and better support from educated doctors. Roughly 100 million in the US belong to managed healthcare, and ME/CFS care is almost universally...

Bump. Starts 30 minutes from this post.

Psychiatrists fail to recognize that their own inappropriate treatments can create suicide risk in chronically ill patients. In the 1990s, after individual antidepressants and ECT failed to improve functioning and fatigue, it was very common (for me) to be prescribed drug cocktails of up to 5...

Reminiscent of Ruqsana Begum, who lost her job due to ME, but is now a kickboxing champion who manages her condition "with a strict diet and training regime". https://www.s4me.info/threads/woman-with-me-won-world-kickboxing-championship.1340/

In the United States, ME and CFS and ME/CFS (and SEID) are generally considered the same. ME and ME/CFS are becoming more common, while CFS and SEID seem to be declining in usage. Regardless, in the US, ME/CFS is no longer a diagnosis of exclusion. It is a differential diagnosis that can...

Every doctor needs to understand this. The days of abandoning ME/CFS patients without care, telling them exercise more, or relegating them to psychiatry are over. Doctors must provide symptomatic relief for the worst symptoms and try to improve patient quality of life.

I don't like laundry lists of ME/CFS "typical symptoms". Not everyone with ME/CFS has even half of the 20 symptoms listed. I have 7... maybe 8.

Depressing article. I'm reminded of this quote about science and the environment.