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I am now so pumped up and full of hormones, that hot flashes are simply a thing of the past. I don’t miss the sweaty palms, that once slid down my keyboard, nor the soaked sheets I would wake up in.

I had not heard it was controversial. Is this when taken daily, or when taken for flareups?

Hi @Joh! Been thinking about his all day. We need to dump FB and start a new global (borderless) advocacy website. One where we can post a list of tasks, and where people can sign up to take ownership of a task. People can chart their progress with a task, and mark it done when complete. They...

Apparently the young women, who volunteer their seat, don’t read the Metro? ;) Why you should not offer elderly people a seat on public transport Read more: http://metro.co.uk/2017/10/18/why-you-should-not-offer-elderly-people-a-seat-on-public-transport-7009354/

I often think Women with ME, are the toughest Women on the planet! :trophy@:hug:

@Liv aka Mrs Sowester Have you tried taking oral prednisone? Also, have you had a Dexa Scan in the last year to determine if you have bone loss (osteopenia or osteoporosis)?

http://millionsmissing.meaction.net/ “Please sign up to join our next day of action. This page will be updated over the next few weeks with new calls to actions, resources, timelines, and templates. We'll also be emailing about our first organizing call this February! There are ways for...

Wow!!! That’s impressive!!

@Webdog Did you see this thread? It might be good information (references) to include in a letter. :) https://www.s4me.info/threads/article-on-me-in-new-york-state-academy-of-family-physicians-winter-2018-family-doctor-journal.2315/ http://www.nysafp.org/NYSAFP/media/PDFs/Family...

May I suggest you call them starting today, and every day, until you get an answer? https://www.cdph.ca.gov/Pages/contact_us.aspx If you are able to set up a meeting with them, in person, I will attend it and be your spokesperson. I have a personal grudge against KP, so am highly motivated.

Welcome to S4ME @Emily Taylor !!

This also demonstrates the power of patient (and caregiver) activism.

It’s so cool to see the OMF logo on the Pineapple Fund site, under the list of charities supported! https://pineapplefund.org/

Seems that MUS translates too “ we are too cheap to muster up the money to spend on medical research” :emoji_microscope:

Did you see the film “Concussion”? It was based from a true story. I met a few people in my lifetime who had head trauma, from a car accident, and never fully recovered. It’s very sad. I hope we can learn more about concussions, and also do more research to find out if head trauma is related to ME.

It’s a great example of how thinking “out of the box” can build a new path in health care.

Here are few scrambled ideas. I am having trouble thinking tonight. Yes agree, similar to a “black box warning” You could also try reading about IRB’s and informed consent to get some ideas. https://en.wikipedia.org/wiki/Institutional_review_board Essentially without a bio marker, and no FDA...

The US requires an IRB, institutional review board. https://en.wikipedia.org/wiki/Institutional_review_board

Heathwise seems to be a US based company.

It may take a Class Action Lawsuit, and some bad press, to get their attention and also Kaiser’s. Sounds like they won’t budge, because it’s almost an admission of guilt, if they remove the CBT/GET references. Also, I would challenge them on the “these treatments may be helpful to some ME/CFS...