Disabled Americans Protest US National Institutes of Health's P2P Meeting

FOR IMMEDIATE RELEASE   Disabled Americans Protest US National Institutes of Health's Pathways to Prevention (P2P) Workshop Demonstrations at NIH in Bethesda, MD Bethesda, MD, December 8, 2014 -- On December 10, 2014, disabled Americans will protest to voice their anger over continued mistreatment by the U.S. National Institutes of Health (NIH) and Department of Health and Human Services (HHS). The demonstration is slated for this location and time: in front of the NIH Gateway Center on South Drive, Bethesda, MD, 7:30 a.m. – 2:30 p.m. Continue reading

Frequently Asked Questions for the National PR Campaign for ME

I’m not sure if I like the idea of using hired demonstrators or actors. Isn’t that phony? Won’t we be ridiculed? For normal healthy people, the idea of hiring demonstrators is somewhat controversial. Politicians and other groups actually do this all the time, but it's done secretly. It’s called "astroturfing" which is the opposite of "grassroots" - so called fake advocacy. This is not our situation. We are very much grassroots and very much not healthy and not able to do our own demonstrations, or we would have taken to the streets decades ago. We have been put in a position where we have been forced to do this to get our message out.  The actors will represent patients who are too sick to demonstrate themselves. Continue reading

Offensive NIH Flyer Worked Over By ME Patients

Over the weekend, the NIH released an offensive flyer regarding the upcoming December 9-10 "Pathways to Prevention Workshop for ME/CFS". A group of ME patients on Facebook came up with their own "corrected" version of the flyer. Thanks to Laura Vitale for the great artwork. Please share!  

Read The Full PR Campaign Proposal - Get The Rest of the Story

Here is the full proposal sent to us by Crowds On Demand, the PR firm we intend to hire to help us with a National PR Campaign for ME. It provides additional information which you should find helpful in envisioning what a 6 month media campaign will look like: Crowds On Demand Public Relations Campaign for ME Advocacy October 24, 2014 Continue reading

Send an eCard to Karina Hansen for Nov. 7

If you're not familiar with Karina Hansen, she is the young lady in Denmark who was abducted and taken to a pysch hospital because she has ME/CFS. She hasn't been able to see her parents for at least a year and a half. If you missed sending a physical birthday card to Karina for November 7, you can still sign this eCard. The card will go to her mother, as Karina is being blocked from receiving cards herself. http://www.groupcard.com/s/E5VNSbN2s_H&ec=1kqLwnKqilV You can keep up with what's going on with Karina here: https://www.facebook.com/JusticeForKarinaHansen?ref=br_tf  

Tell Secretary Burwell To Stop The P2P!

Use our easy One Click app to tell Sylvia Burwell, Secretary of the Department of Health and Human Services to stop the P2P Workshop for ME/CFS. The outcome of workshop will negatively affect ME patients for decades to come. You may edit the letter to personalize it. Expires December 15, 2014, so act now! If you can't see the letter, click on the title of this post to get to the full blog post. After you send the letter, please share it widely on message boards, social media and email. We have found out that HHS is monitoring our online posts and the media, so make HHS sweat by sharing, liking and commenting! Continue reading

Two Tier Lyme Testing Doesn't Work

As many ME patients also have Lyme or suspect they have Lyme, but can't get a diagnosis, we feel this will be of interest to you. The current two-tier Lyme testing is actually designed not to find Lyme. A Facebook group called CALL TO ACTION!  CDC: NO MORE TIERS! has been created to address this issue with the CDC. Join the group here:https://www.facebook.com/groups/cdcnomoretiers/ to learn about this issue and how you can help.  

Send Karina Hansen a Birthday Card

Karina Hansen is another European child with ME who has been locked away against her will. She has been locked away since she was 24 years old. Karina will be 26 on November 7th. The following information has been reposted from the ME Global Chronicle. It is Karina Hansen's birthday on November 7th. She has been moved from the hospital in Hammel and is now being held here: Tagdækkervej 10, 8450 Hammel, in a home for people with brain damage! No one knows why… Karina's parents are still not allowed to visit her and are kept out of her ‘case’… and Karina herself still has a guard, who is not very talkative or helpful. We all dearly hope that she has not been injured by the treatment she has had in the Hammel Neurocenter. I hope you will all send Karina a card for her birthday. A lot of cards will show that she is NOT forgotten, and that she will never be forgotten. You can send a card to Karina at the hospital at the following address. It will likely not reach Karina, but it will send a message to the hospital that we are watching them: Karina HansenTagdækkervej 108450 HammelDenmark Then send another card to Karina's parents at this address: Per og Ketty HansenKløvermarken 87500 Holstebro, Denmark Karina's parents will try to give all the cards they get from you to Karina on the day of her birthday. So please show Karina Hansen and her parents that they are not forgotten, by sending cards for Karina on her birthday on the 7th November. Editor's note - to get updates regarding Karina and her case, sign up for the Karina Hansen Facebook page:https://www.facebook.com/JusticeForKarinaHansen

Joanne Locked Away Against Her Will

This has been reposted from the ME Global Chronicle. Joanne – Now Almost A Year In Hospital Against Her Will In November it will be a year that Joanne, the 14 year old girl with severe ME, is incarcerated in a German hospital against her own and her mother’s will. (Read about her fate in the former issues of The Global Chronicle.) The Child Protection officers together with her father obtained a respective court decision to forcibly admit her in a neuropaediatric ward in November 2013, and so far none of our combined attempts to get her free or to at least stop the detrimental “treatment” approaches of the hospital doctors and therapists have born any fruit. Mother has lost custody in February this year because she tried to protect her daughter from the “activation programme” and the resulting deterioration,and she will most probably never get back her parental rights. (Dr.) Nigel Speight unremittingly supports Joanne’s mother and tries to give advice and influence the doctors and other institutions involved, among them the ethics committee of the hospital whose job would have been to assess the constant violation of Joanne’s human rights and her explicit refusal of all the “activation therapies” they enforce on her. Continue reading

Lyme Vigil and Protest Oct 10-11, Philadelphia, PA, USA

As many ME patients also have chronic Lyme, we feel that this information will be of interest to the ME community. In concurrence with ID Week (Infectious Disease Conference Oct. 8-12, 2014, Philadelphia, PA, USA), Lyme protesters will be holding a candlelight vigil in honor of those who have died from Lyme disease, Friday, Oct. 10, 8:00pm at the downtown Marriott. There will also be a protest Saturday October 11, from 8:00am to 3:00pm at the Philadelphia Convention Center (where the ID Week conference will be taking place). The protest will bring attention to the harm and discrimination caused to Lyme patients by the establishment's current definition and practices and promote patients' rights and compassionate care.