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Advocacy Round-up – A Season of Protest and Petition

The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting – of ensuring that our health agencies create guidelines that will improve the lives of people with ME.

We are holding our government officials accountable for their decisions that affect our daily lives. We continue to demand equitable investment in biomedical research. We fight on for access to healthcare, and an end to the stigma of people with ME. And, we are working hard to build relationships with our elected officials to gain their support for this health crisis.

Finally, we continue to come together to build a grassroots movement to bring about sweeping change for our community that has been neglected for far too long.

Enjoy reading the round-up below of some of the action happening in our community this fall. And, applaud yourself for coming together and working hard to make this all possible.

Help set us up for the new year to come, donate to our #GivingTuesday campaign on Tuesday, Nov. 27 and Facebook will match your donation. Promote the fundraiser with your social media circles to spread the love! 


Fighting for change on all fronts 

Individuals who were lied to and misrepresented by Netflix’s Afflicted include (left to right): Jake, Pilar, Jamison, Jake & Bekah, Jill & Janine

Individuals who were lied to and misrepresented by Netflix’s Afflicted include (left to right): Jake, Pilar, Jamison, Jake & Bekah, Jill & Janine

We’re deep in the fight both on the inside – working with agencies to effect change – and on the outside, protesting decisions that will hurt people with ME. This past fall, we’ve launched or supported five petitions that have garnered a total of 32,558 signatures, including:

3,392 – Finland – Tell the health ministers that ME is not a functional disorder

5,129 – Norway – Demand the resignation of an advisory board promoting a biopsychosocial model of ME

10,348 – Per Fink – Stop Per Fink from spreading misinformation about ME at Columbia University  

6,579 – Afflicted – Remove “Afflicted” docuseries from Netflix

8,300 – CDC – Don’t hire a shoddy contractor to create ME treatment guidelines


Supporting the community 

We’re thrilled that we’ve had the opportunity – thanks to the generous support of the community – to hire two new staff members in order to better support our volunteer advocates. In the UK, we’ve brought on Espe Moreno to act as the UK coordinator this fall. She has been busy working with the #MEAction UK community on the NICE process to update the national guidelines on ME, and on preparations for a parliamentary debate on ME.

In the US, we’ve hired Erin Roediger as our new U.S. Advocacy Manager to provide support to our Congress team as we build support for ME on the hill.

Australia

An hour-long, nationally televised discussion panel on ME/CFS in October drew criticism from the patient community, which felt that the program overrepresented the likelihood of recovery from the illness, and promoted harmful graded exercise therapy (GET).

The panel aired on Insight, a weekly current affairs show, and featured a panel of guests and a studio audience who participate in the discussion. For this episode on ME/CFS, producers invited input from seven patients ranging from the severely ill to the recovered, as well as leading Australian researchers, a specialist general practitioner, an exercise physiologist, and a key government advisor and clinician. Read more.


United Kingdom 

NICE final scope

NICE releases its final scope for the ME/CFS guidelines  

#MEAction UK has been working diligently on the scope process that the guideline development committee will use to update its national clinical guidelines for ME.

The National Institute for Health and Care Excellence (NICE) released its final scope for the ME/CFS guideline in October, which included responses from key stakeholders. #MEAction UK is one of those stakeholders. Read our analysis of the final scope here. The final ME/CFS guideline won’t be finished until October 2020.

NICE appoints psychosocial proponent majority to guidelines committee  

#MEAction UK mobilized the community to take action when NICE announced that it had appointed a majority of members to the ME/CFS guideline development committee who promote a psychosocial model of ME. This is the committee who will re-write the country’s new guidelines on ME.

While there are excellent clinicians and advocates on the committee – and expert advisors including Charles Shepherd and Jonathan Edwards — there are several members whose presence is worrying, including Gabrielle Murphy, a co-author of PACE; Chris Burton, who is a believer in MUS and who has only ever published one paper on ME; and Alan Stanton, who is best known for recommending a young person with ME be sectioned.


UK Parliamentary Advocacy#MEAction UK creates toolkit for contacting your MP

We’ve created a toolkit to better equip you to reach out and connect with your MP to gain their support for ME. Gaining the support of MPs is vital to our success in achieving appropriate clinical care and investment in biomedical research for ME.

Whether you are a person with ME, their carer, friend, family member or ally, we ask you to reach out and meet with your MP, and we have created a toolkit to help.

 


Scottish Liberal Democrats pass motion for ME

The Scottish Liberal Democrats voted to pass a motion to recognize, research and educate about ME. Drawn up in consultation with #MEAction Scotland, the motion now becomes party policy. It is a hugely encouraging result, and one that will hopefully pave the way for other political parties in Scotland and the UK to follow.

Unfortunately, the party did not accept the motion wholesale but added an amendment to the motion – that passed with a single vote – that calls for the retention of Cognitive Behavioural Therapy in the Scottish Good Practice Statement. Read more.

 


United States

Ten ME organizations ask Congress to create legislation for ME/CFS 

Last week, we made a historic push for Congress to create legislation for ME/CFS. On Nov. 9th, #MEAction, the Solve ME/CFS Initiative, and eight other ME/CFS organizations sent a letter to our champions in the House of Representatives requesting legislation for ME/CFS.


Center for Disease Control and Prevention Update:

Literature and evidence review contract for ME: We fought hard for the CDC to hire a reputable contractor to undertake the literature and evidence review of ME that will affect our treatment guidelines.

Despite our petition of more than 8,000 signatures expressing concerns with the Pacific Northwest Evidence-based Practice Center (EPC), which had previously conducted a flawed literature review of ME, the CDC awarded the bid to the EPC. We will continue to hold the CDC’s feet to the fire to ensure that the EPC does not make the same mistakes with this contract.

ME/CFS website: #MEAction sent its recommended changes for the CDC’s ME/CFS website, which incorporated feedback from the community, at the beginning of October. Our recommendations urge the CDC to make clear the harms of graded exercise; place greater emphasis on the importance of pacing; and more accurately represent severe ME.

The CDC has responded positively, and has suggested that we set up a meeting to discuss our recommendations to edit the website. We are in the process of setting up a meeting now, and will keep you posted on the date!


Health and Human Services update:

We told the HHS that it had NOT accomplished its mission 

We quickly came together to protest online after the HHS suddenly dissolved the Chronic Fatigue Syndrome Advisory Committee (CFSAC), saying that it had accomplished its mission and that the committee was no longer needed.

We sent a letter to Secretary Azar demanding the CFSAC be reinstated, and that the secretary meet with us to discuss the situation. HHS has responded that the Secretary Azar is too busy to meet with us, but has indicated that the HHS assistant secretary’s office will follow-up with our request for a meeting.

 


Federal Drug Administration update:

We are campaigning for the FDA to keep our compounded drugs legal 

The FDA is in the process of reviewing bulk substances used in IV therapies, injections, and oral compounds to determine whether or not they will remain legal or be banned from being used in compounding. (This process does NOT affect commercial supplement manufacturers – only compounded products.)

Now, is the time to let the Pharmacy Compounding Advisory Committee know which compounded medications are important to you. (If the FDA does not hear from us, it is probable that the committee is not considering the needs of people with ME in its decision-making.) Learn more and take action!

Even though oral or commercial versions of these substances are available, many people with ME are allergic to common fillers and require a clean, compounded version, or require a special dosage or format (to get them directly into our bloodstream, for example, in a case where our intestines are not able to absorb them).


National Institute of Health Update:

NIH Campus

NIH creates a council focused on advancing research into ME

The NIH has formed a new council focused on how best to advance research into ME/CFS.

The committee, called the NANDS Council Working Group for ME/CFS Research, will be comprised of scientists, clinicians, representatives from advocacy organizations, and individuals with ME, including a representative from #MEAction and the Solve ME/CFS Initiative. The committee will be housed in the National Institute of Neurological Disorders and Stroke (NINDS).

 

We’ve scheduled a meeting with Francis Collins for December! After much back-and-forth over scheduling, we have successfully scheduled a meeting with the NIH Director, Dr. Francis Collins, for Friday, Dec. 7, 2018, to discuss our demand for increased research into ME.

We sent Collins a letter this past May, following the global #MillionsMissing protest, that outlines specific mechanisms for the NIH to undertake within the next 12 months to reach three key goals. Our demands also include significantly ramping up research funding to be commensurate with the disease burden, which studies approximate at $190 to $250 million.

The meeting with Dr. Collins will include the following participants: Walter Koroshetz, M.D., Director, National Institute of Neurological Disorders and Stroke; Vicky Whittemore, Ph.D., Program Director, National Institute of Neurological Disorders and Stroke; #MEAction Executive Director, Jennifer Brea; #MEAction’s Director of Global Community & Campaigns, Ben HsuBorger; activists Terri Wilder and Mary Dimmock; patient and scientist, Dr. Becky Taurog, PhD; and patient and immunologist, Dr. Rochelle Joslyn, PhD.

 

Mary Gelpi sends 50k petition to Francis Collins 

You may have been one of the 50,000 people who signed the petition that Mary Gelpi launched three years ago asking the director of the NIH, Francis Collins, to increase funding to 100 million annually for ME/CFS.  In October, she sent a large box containing the petition and 50,000 signatures to Francis Collins.

She narrates the journey of finally sending the massive box of signatures in a fantastic blog post.

“The box was too big for Matt’s car, so we assumed my moms car would suffice: a larger mid-size sedan. Still the corners jammed against the dashboard and window panels. The trunk? No, the trunk would not contain it either. So finally we had to put it in the bed of my step-dads old Toyota truck. I say ‘we’ but who am I kidding? Matt did all the literal heavy lifting.”

Read the full post here, and be sure to subscribe to her blog, 25 Pills a Day.


We protested the invitation of Per Fink to teach at a conference at Columbia University 

Per Fink was invited to speak at the 4th Annual Psychosomatics Conference hosted by the New York State Psychiatric Institute and Columbia University Irving Medical Center in New York City on Oct. 20th.

Per Fink was the director of the clinic that held Karina Hansen against her will, leading to over three years of imprisonment. He was also one of the early hysteria theorists in ME research, and one of the original supporters of the idea of ‘medically unexplained symptoms’ (MUS) as a catch-all for dozens of different illnesses.  Fink now campaigns for ‘bodily distress syndrome’, which is fundamentally similar to MUS. Read more of #MEAction’s summary of Per Fink and why his research harms people with ME here.

ME advocates and activists, including Terri Wilder and David Tuller, immediately sent letters to the Psychosomatics Conference asking them to disinvite Per Fink, but received boilerplate, identical responses.  Landa, a conference representative, stated she understood ME/CFS is a real disease, and offered the reassurance that the Psychosomatics Conference “will not focus on ME/CFS.”  Of course there was the distinct possibility that it would come up in the context of Fink’s previous work, whether it was the focus of the conversation or not.

#MEAction launched a petition that gained over 10,000 signatures and held an in-person protest against Per Fink’s invitation to Columbia University, where Columbia’s Center for Infection and Immunity investigates the biological disease ME, and has directly stated that ME is not a psychosomatic illness.

Unfortunately, Columbia University’s Irving Medical Center continued to support Fink’s right to teach about his unsubstantiated theories for continuing medical education credits, despite the direct harm they have caused people with ME.

#MEAction New York organized a protest outside while clinicians, scientists, and advocates attended the conference to challenge Fink’s theories and to highlight his role in Hanson’s involuntary institutionalization.  New York State Senator, Brad Hoylman, attended the protest to lend support to people with ME. “We need to ground research in ME based on biological causes and that’s why I am here today to stand up for the activists, to stand up for the patients,” he said.

Keep us going strong!

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Donate to our #GivingTuesday campaign on Tuesday, Nov. 27 and Facebook will match your donation. Promote the fundraiser with your social media circles to spread the love!  

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