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I've attached a PDF of the NY State Health Commissioner letter from last May (it's the second half of the letter). Cort also wrote an article about it: https://www.healthrising.org/forums/threads/new-york-tells-its-doctors-to-watch-out-for-chronic-fatigue-syndrome-me-cfs.5417/ PS: I finally...

Here's the email response I got from SendGrid after reporting the phishing email. SendGrid is where the emails originated from. SendGrid closed the ticket, so I don't expect to hear further from them on this.

If you look at the email header, the email actually originated from sendgrid.net. SendGrid doesn't have the best reputation for cracking down on spammers and phishing. However, you can report these emails. The following link has instructions on how to report malicious emails to SendGrid...

New related thread. Ophthalmic correlates of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) https://www.s4me.info/threads/ophthalmic-correlates-of-myalgic-encephalomyelitis-me-chronic-fatigue-syndrome-cfs.2603/

Very much enjoying skimming this. I've been unable to find an opthamologist in-network with any ME/CFS experience. All eye tests so far have been normal. But this document might help validate my symptoms. Or at least better describe them. Looking through the eye symptoms, I've had many for...

Looks like I forgot to include another reply I got a while back from the CDC, so I'll post it now. Note that there is a "cfs @ cdc.gov" email address. Shhhh. :jawdrop: The CDC certainly is taking their time preparing the new materials. They've gotten good input from what I've seen. Hope they...

If I knew such a person, I would contact them. Edit: Right now, I'm wondering whether it's worth using more of my limited energy on this sisyphean task at the state level. Or is it better to wait for the new CDC materials, which should come out soon?

Just an update on my complaint filed with the California Department of Public Health (CDPH) regarding Kaiser Permanente continuing to recommend GET for ME/CFS. It's been a month of CDPH saying "Someone will reply to you within 2 business days." When I don't get a reply as promised, I contact...

I think these are the existing threads. https://www.s4me.info/threads/proposed-2019-presidential-budget-for-cdc-involves-zeroing-of-cfs-program.2477/ https://www.s4me.info/threads/us-cuts-to-prevention-and-public-health-fund-puts-cdc-programs-at-risk.2390/

Medicine: You are healthy. All your tests are normal. We don't know why you feel sick. There is nothing we can do for you. Psychiatry: We know exactly what is wrong with you. Fortunately, it's just a matter of finding the right combination of meds and you will be fine. We promise.

Article about analyzing research databases of viral genomic sequences to find viruses that produce peptides similar to human hormones and regulatory proteins. They conclude some of these viruses could be a factor not only in diabetes, but metabolic disease, autoimmune disease, and cancer...

Bump. It's starting.

The IOM (and now CDC) diagnostic criteria start off with loss of function: "A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities". Only after loss of function are fatigue and PEM mentioned.

Self reports not reliable? Perhaps a bimodal scoring system could help with this.

That works. Thanks.

Just FYI, I couldn't get the "Take Action" button to work. Tried 3 different browsers (Firefox, Safari, Chrome).

Apologies for lack of clarity. I didn't mean to suggest any relationship between NICE and the CDC. What I intended to say is that Healthwise itself considers NICE and the CDC top level authoritative sources for its own ME/CFS treatment recommendations. Changes to NICE guidelines could affect...

This will also have an impact in the United States. Healthwise, a major medical content provider which continues to recommend GET and CBT, has stated they are watching NICE guidelines closely. Healthwise apparently considers NICE just as authoritative as the CDC.