Search results
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petition: Retract Misleading PACE Claims
This is the website: http://www.meaction.net/- Merry
- Post #4
- Forum: Advocacy, Contests and Events
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petition: Retract Misleading PACE Claims
Perhaps you are confusing #MEAction.net, the website Jen Brea set up, with an organization in the UK? Thanks for signing, @Empty.- Merry
- Post #3
- Forum: Advocacy, Contests and Events
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petition: Retract Misleading PACE Claims
#MEAction has posted a petition: http://my.meaction.net/petitions/pace-trial-needs-review-now Please sign. Thank you.- Merry
- Thread
- Replies: 51
- Forum: Advocacy, Contests and Events
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Vote daily in Aviva contest for National ME FM Action Network
Hello, @Lissa. Sorry to hear that your health has been worse in the past month. Take it easy. National ME/FM Network came in 2nd (that is, if all the votes are verified legitimate by Avia), so it gets $5000. In the next stage of the contest a panel decides which of the finalists get...- Merry
- Post #31
- Forum: Advocacy, Contests and Events
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David Tuller: "The Troubling Case of the PACE Chronic Fatigue Syndrome Study"
Yes, the editors of The Lancet should be pressured. Information on how to contact the journal's office by email or telephone is here http://www.thelancet.com/contact-us . The email address of Richard Horton, editor-in-chief, who declined to speak with David Tuller, is included.- Merry
- Post #7
- Forum: Chronic Fatigue Syndrome (ME/CFS) Research
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David Tuller: "The Troubling Case of the PACE Chronic Fatigue Syndrome Study"
As a guest blogger at Vincent Racaniello's Virology , David Tuller examines the PACE trial and the researchers: http://www.virology.ws/2015/10/21/trial-by-error-i/ I've just begun to read. Excellent so far. Amazing the level of incompetence and the corruption among the researchers and the...- Merry
- Thread
- Replies: 8
- Forum: Chronic Fatigue Syndrome (ME/CFS) Research
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#MEsplaining
What makes "mansplaining" such a delicious word is that "splaining" mocks "man." So the mockery of "splaining" -- how does that work in "MEsplaining"? If you use the word to mean how an ME patient has to explain to the doctor, then is it self-mocking? If you use it to mean how an ignorant...- Merry
- Post #17
- Forum: General Discussion
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#MEsplaining
I thought "mansplaining" is when a man talks down to someone, usually a woman -- when a man explains something in a condescending way. And I thought Jen was asking for an equivalent term for the way some doctors, who know nothing about ME/CFS talk, arrogantly, as if they are experts on the...- Merry
- Post #14
- Forum: General Discussion
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#MEsplaining
From Canary in a Coal Mine FB: Canary in a Coal Mine 10 hrs · Edited · There needs to be a word (perhaps a cousin of mansplaining?) that means to be "skeptical" of something of which you have no experience, knowledge, or expertise. I call it "quacking."- Merry
- Post #3
- Forum: General Discussion
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Vote daily in Aviva contest for National ME FM Action Network
@Folk, I have voted the last two days. The first day I assumed I was registered because I've participated in past years, but I couldn't login. I then created a new account but didn't find the confirmation email until the next morning. So I missed the first day's vote. Will I end up with an...- Merry
- Post #11
- Forum: Advocacy, Contests and Events
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Post Ebola Syndrome or ME/CFS?
In this past week Slate published a long article by Amy Maxmen on the continuing problems, both physical and social, of Ebola survivors: http://www.slate.com/articles/health_and_science/medical_examiner/2015/09/ebola_survivors_symptoms_sierra_leone_who_conference_and_how_to_help.html- Merry
- Post #10
- Forum: Health News
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Happy Birthday, Cort!
Happy Birthday, Cort. Best wishes. Thanks for all you do.- Merry
- Post #5
- Forum: General Discussion
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OMF Phase 1 End ME/CFS Project fully funded
Linda Tannenbaum at the Open Medicine Foundation just sent out an email announcing a generous donation that brings the fundraising effort to the $1M needed to complete phase 1 of the End ME/CFS Project: "We are thrilled to announce that we just received $350K from a tremendously generous...- Merry
- Thread
- Replies: 0
- Forum: ME/CFS and FM News
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Resource ME/CFS Organizations Demand Congress Restore CDC Funding Program [Deleted]
In your thread, @Neunistiva, at Last Week tonight, KarenDenmark stated that John Oliver ridiculed ME Awareness Day last year. I've been googling to try find a clip. It may have been in Season 1, Episode 4 that he listed "Bullshit Days," including ME Awareness (or possibly he said CFS Awareness...- Merry
- Post #19
- Forum: Advocacy, Contests and Events
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The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread
Interesting. Thanks for the information. I hate to think other people feel that "knitting needle in the heart" pain. -
The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread
As I said in another thread, blithely taking the thread off topic, I have often experienced pain in blood vessels that I think of as the blood vessels being "on fire." This is not a burning sensation but an ache in the blood vessels, which are tender to the touch. I think of the blood vessels... -
Free DNA test in U. of Michigan Genes for Good research
Here's an article that discusses the issue of donating DNA samples. Genes for Good is one of the projects mentioned. http://www.slate.com/articles/technology/future_tense/2015/04/recruiting_people_for_genetics_studies_on_facebook.2.html- Merry
- Post #2
- Forum: Other Research
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Fluge/Mella Take out Patent on Nitric Oxide Treatment for ME/CFS
Hey, @JennyJenny. I like the idea that you draw pictures of your pain for your doctors. Dare I ask how doctors have reacted to the pictures? I believe that the most distressing pain I experience -- and fortunately I don't experience it often -- is the feeling that the flesh of my forearms is... -
Free DNA test in U. of Michigan Genes for Good research
Get a DNA test for free by participating in this University of Michigan "Genes for Good" research project. https://genesforgood.sph.umich.edu/ An ME/CFS friend this morning sent me a link in an email, and I've only had a quick look at the website. I understand that participants, besides...- Merry
- Thread
- Replies: 2
- Forum: Other Research
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