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enrolled in the MELO study last year, received this notice today. looking forward to receiving the results.

You’re so welcome, I hope it helps! Not sure if you’re familiar with the Bateman Horne Center https://batemanhornecenter.org/education/top-resources/ but they have much useful information on navigating these issues. edit to add ohio provider list:

Two groups to try on FB - Dysautonomia International - Ohio Support Group & ME-ICC & other marginalized diseases (public).

He has a very good local reputation as someone who has an extraordinary grasp of the field/issues patients are struggling with. I’ve considered seeing him myself (long waiting list) but am taking a palliative path currently. This link can give you an idea of his thoughts and why his office might...

I am also in Ohio/NE and although I have not seen Dr. Wilson personally his office might be a good resource for local referral. https://my.clevelandclinic.org/staff/17075-robert-wilson#reviews

Truth and reconciliation first requires truth. At the very least an insistence on the inclusion of M.E. cohorts in research going forward.

Not surprising, but I honestly wasn't expecting a full denial. I respect the privilege(s) and understand competing interests/harms, it's the cracks we continue to fall through turn into chasms. "The Office of the Assistant Secretary of Health (OASH)/ Office on Women's Health (OWH) search and...

Thank you! I've been thinking about other contacts within HHS the nominations for the LCAC are still open until 1/16 (if I remember correctly) mostly in the spirit of the past informing the path ahead.

I got in touch with Jennie in 2019 right after the govt. shutdown (which the date for HHS to reply to Congress fell within) but at that time she hadn’t heard anything more. Checking her website she’s carrying a heavier load right now and I wouldn’t want to impose.

Writing for some advice/guidance on pursuing an appeal of a rejected FOIA request for information on the dissolution of the Chronic Fatigue Syndrome Advisory Committee/CFSAC in September 2018. I’m including some background links for context as well as the denial letter...