Thursday, May 12, 2016

This Is It! May 12th International ME/CFS Awareness Day!

A version of this post first appeared on ProHealth.

By Erica Verrillo

International ME/CFS Awareness Day was originated by Tom Hennessy, an ME patient and staunch advocate who testified at numerous national and international ME/CFS conferences and meetings. Tom chose May 12th as ME/CFS Awareness Day to commemorate the birth of the famous nurse, Florence Nightingale, who suffered from an ME/CFS-like illness. May 12 is also International Nurses Day.

Over the years May 12 has been expanded to include other neuro-immune illnesses that share many of the features of ME/CFS. At present May 12 includes Fibromyalgia (FM), Lyme disease, and Multiple Chemical Sensitivity (MCS). All of these illnesses employ May 12 as an opportunity to raise public awareness, to contact representatives for more research, and to promote fund-raising activities.

Although it is not formally recognized in the US, International ME/CFS and FM Awareness Day is observed worldwide.

Simple things you can do:
  • Wear a blue ribbon for ME/CFS, a purple ribbon for FM, or a green ribbon for Lyme disease and MCS.
  • Tweet on May 12. Add #may12th to your tweet.
  • If you have a blog or a Facebook page, post something. It can be as simple as an awareness image.
  • If you have some spare cash, donate to research efforts. Open Medicine Foundation is raising money for their End ME/CFS Project.

INTERNATIONAL

Light Up the Night Challenge. “The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue (ME/CFS), purple (FM) or green (Lyme and MCS). We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!” See the Facebook page HERE.

#May12BlogBomb is back! May 12th is Awareness Day for ME, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. Every year bloggers use this opportunity to express their views and to raise the profile of these much misunderstood and often maligned conditions. Blog bomb information is HERE.

Google – Create a Doodle. Every year the doodlers ask Google to create a doodle. This year they are also supporting other events and activities. Please go to their Facebook page HERE.

One week about ME on social media This is where people with ME are asked to share one picture a day about their ME during ME awareness week. Each day has a specific photo topic: smile for ME, your favourite low level activity, something which makes you feel better, get creative with spoons, something you're preparing for, a hand written message to fellow spoonies, you on a good day. There are also a topic to write about each day alongside your photo for example "I wish people without ME would..." The photos are to be shared on social media using the hashtag #1weekaboutME.


ME/CFS EVENTS

#Millionsmissing Virtual Protest – May 25

The #Millionsmissing protest is being organized by ME Action to draw attention to the plight of millions of people with ME/CFS. There are several things you can do to participate in #Milllionsmissing that do not require leaving your home.

1. You can send your shoes to Washington DC.

ME Action is asking patients who are unable to make it to the physical protest locations to please donate one pair of shoes. They will display them at the Washington, DC protest. You can send a pair of old shoes or if it’s difficult to get to the post office, order shoes on Amazon or Ebay and have them shipped directly. During the protest, images of these shoes will be posted to #MEAction’s social media account using the #MillionsMissing hashtag, so patients can see that they are being represented during the demonstration. Shoes cannot be returned. After the protest, they will be donated to a local charity or kept for a future installation.

Fill out this form and and then mail your shoes to: Paige Maxon, P.O. Box 26051, Winston Salem, NC 27114. All shoes must be postmarked by May 10th, 2016!

Send your shoes to London

You can also send shoes to the London protest. Fill out this UK form and mail to: LA Cooper, 25 Grassmead, Thatcham, Berkshire, RG19 4FP (UK)

Better yet – send to BOTH locations  

2. You can also put a pair of shoes at the end of your driveway or your doorstep.

On May 25th, take a pair of shoes (or several) and put them on your doorstep, lawn, or driveway. Take a photo and post it on social media #MillionsMissing. Anyone can participate. You might pair the shoes with a sign that expresses what the empty shoes mean to you. Some examples: “I cannot walk to the end of my driveway” or “My brother should be here.”

3. Use social media

On May 25th, post selfies on social media (Twitter, Facebook, Instagram, etc) – in your bed, home, wheelchair, at work, wherever you live – to help us show online the millions who are missing from the protest. Use the hashtag: #MillionsMissing so that we can aggregate all the photos. You can use #MEAction #mecfs #pwme to help identify your post.

You can hold your own #Missingmillions protest sign with a slogan in your photo. Here are a few examples to get started:
  • Missing my life for 22 years because of ME
  • Missing sufficient research
  • Missing adequate medical care
  • Missing a doctor who believes me
  • Missing college / Missing my family / Missing running in the park
4. Promote #Missingmillions

Promote the hashtag and shoe installation on your social media accounts. Email patients, friends, families, allies who are in the vicinity of the satellite protests http://millionsmissing.meaction.net/locations/

5. If you are in the US, send an informational packet to your representatives

Send this Forgotten Plague Congressional Pack to your congressmen/women and state representatives before the protest.

Find your congressional representative here: http://www.house.gov/representatives/find/

Find your Senator here: http://www.senate.gov/senators/contact/

Detroit, Michigan

New organization FIND (Foundation for Immunological and Neurological Diseases) will be hosting an
ME/CFS Awareness Walk 2016 - May 14, in Troy, Michigan (Detroit area), contact Frank Plizga -  sicnar@comcast.net

https://www.facebook.com/events/227053180988355/

The walk is from noon to 1 pm. So there are 5 confirmed walkers and 5 conditional. There will be balloons, signs and passouts.

Fundraising

Undies on the Outside Challenge

Help raise funds for OMF's End ME/CFS Project! WHY UNDIES ON THE OUTSIDE? Because superheroes wear their undies on the outside, and you have to be a superhero to live with this disease! Wearing underwear on the outside symbolizes bringing an invisible illness, which is usually hidden away, out into the open.

AUSTRALIA

The Do Something for ME project is designed to raise awareness in the general community about ME/CFS and to raise funds to support Emerge Australia to continue its work advocating for, educating about and providing information on the condition.

IRELAND

Walk for ME is a 5 km Charity Walk to raise Awareness and Funding for biomedical research into M.E. (Myalgic Encephalomyelitis) at the beautiful Belevedere House & Gardens. All proceeds going directly to the charity "Invest In ME" for biomedical research into M.E. “We're not strict on people finishing the full 5 km, if they're not able. A person can undertake any amount of distance.” For more information go HERE.

The Irish ME/CFS Association is pleased to announce that it has arranged for four free screenings of the documentary on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Forgotten Plague, in various venues around Ireland during May, ME/CFS Awareness Month: 

- Limerick: South Court Hotel. Thurs, May 5. 11:30 AM. 

- Galway: Maldron Hotel, Headford Road. Thurs, May 12. 7.30pm 

- Dundalk: An Táin Theatre, Crowe Street. Tues, May 17. 2 PM. 

- Dublin: Crowne Plaza Dublin Blanchardstown. Sunday, May 29. 3 PM. 

These are the first public screenings of the documentary in Ireland. 

All are welcome. Further details are available on the Association’s website www.irishmecfs.org

UK

Please come support our #MillionsMissing UK Protest in London!


When: Wed. May 25th, 2016 12 PM – 2PM

Where: Department of Health Richmond House

79 Whitehall, London SW1A 2NS, United Kingdom

Be a part of the #MillionsMissing international day of protest, by attending #MillionsMissing UK, either physically or virtually. Come stand for the millions of severely ill patients living with this ME/CFS who are missing out on every day life. Whether you’re a patient, healthy ally or someone just learning of this disease, everyone is welcome to join in the fight for more funding for research and education.

To be at the protest in London, we suggest you bring a blanket, pillow, mobility scooter, or wheelchair to be as comfortable as possible. Consider wearing duct tape, with #MillionsMissing written across to represent this silent epidemic.

To particiapte virtually, please send shoes to the #MillionsMissing DC Protest or the #MillionsMissing UK Protest. To send shoes to the UK Protest, please mail to: 25 Grassmead, Thatcham, Berkshire, RG19 4FP (UK) 

Email L.A. Cooper with any questions at info@changeformechangeforus.co.uk

____________________

Blue Sunday

When: May 15

Where: UK

Blue Sunday is an event which has been going on for several years. Anna, the organiser invites you to have a coffee morning with your friends and family in aid of the ME Association. Guests are asked to bring the amount of money they would normally expect to pay for tea and cake as a donation. You can also take part in the national movement online, by joining in virtually! Here is a link to a blog post where Anna talks about the event in more detail, and here is a link to the online event, for those who are unable to attend an event or host their own. Here is a fundraising page, where you can join the team, or donate to a member of the team! You can read about the history of the event here.

____________________

Go blue for ME

This is organized by the ME Association, as blue is the color for ME awareness the public are encouraged to dress up in blue, or do something related to the color blue for ME awareness day which is the 12th of may, or for ME awareness week which is the 9th-15th of May. Share your blue antics on social media using the hashtags #GoBLUEME, #MEawareness or #MEawarenessweek! See the image below for more details.




Tuesday, May 10, 2016

#MillionsMissing ME/CFS Protest: Demands

Reprinted with permission from ME Action.

On May 25, 2016, at the #MillionsMissing demonstrations, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services to implement the following list of demands.

Our goal is to give the 1 to 2.5 million[i] disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing — missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. 

Millions of dollars are also missing from ME/CFS research, and millions of medical providers are missing out on proper clinical training to diagnose and help patients manage this devastating illness.

For ME/CFS patients and their families, we demand:
  1. Increased Funding and Program Investments
Funding and program investments commensurate with the disease burden
  1.  Clinical Trials
Clinical trials to secure medical treatments for ME/CFS
  1.  Accurate Medical Education
Replacement of misinformation with accurate medical education and clinical guidelines
  1.  A Serious Commitment
HHS leadership, oversight and a serious commitment to urgently address ME/CFS

Rationale and Details for the #MillionsMissing ME/CFS Protest Demands

For ME/CFS patients and their families, we demand:

1. Funding and Program Investments Commensurate with the Disease Burden

The NIH must dedicate funding and program investments for ME/CFS commensurate with the disease burden, and they must do this without continued delay, as patients have already been waiting three decades.

Rationale

Thirty years of neglect by the NIH, combined with a stigma toward this disease, has resulted in insufficient and erroneous research as well as uninvolved academic researchers and pharmaceutical companies. To address these problems, and save lives, the NIH must immediately implement an aggressive set of investments to substantially ramp up its funding and program commitments over the next 3-5 years.

Details

To finally have NIH funding and investments commensurate with disease burden, our demand is to increase the paltry $7M per year currently allotted to ME/CFS to the more equitable amount of $250M. This new program of investments must be developed and executed in collaboration with ME research experts, clinicians and patients, and must include:
  • Funding five regional ME/CFS Centers of Excellence, each with a research/clinical trial component and also a clinical care component to address the current crisis.
  • Funding multiple requests for applications (RFAs) for ME/CFS over the next three years, for a total of $10M the first year, $20M the second year and $25M the third year.
  • A significant increase in funding for investigator-initiated extramural research (including hypothesis-generating research), as well as a commitment of intramural staff focused on ME research.
  • Funding a research network that will collaborate in the development and execution of an ME/CFS research strategy.
  • Funding an outreach plan to engage major academic centers and pharmaceutical and biotech companies in ME/CFS research and drug development.

2. Clinical Trials to Secure Medical Treatments for ME/CFS

HHS must fund and incentivize ME/CFS clinical trials to secure medical treatments for ME/CFS. This must be done with great haste, as patients are missing out on their lives and losing their lives to this disease.

Rationale

After thirty years, there is still not one Food and Drug Administration (FDA)-approved medication for the disease. An estimated one-quarter of ME/CFS patients are severely ill, meaning at least two hundred and fifty thousand patients are unable to leave their homes or bed, many for decades. With no FDA-approved treatments available to them, they have little hope of ever improving. To address this situation, HHS must fund and incentivize clinical trials in the following manner:

Details
  • We demand the NIH immediately partner with the FDA to address the key obstacles to moving clinical trials forward. NIH must also actively incentivize pharmaceutical and biotech industries so that at least five accelerated clinical trials of medications are conducted over the next five years. The goal must be getting at least two FDA-approved medications on the market for ME/CFS patients in the next five years. Proposed medications include Ampligen, Rituxan and antiviral medications, all drugs that have been in trials already and have been successfully used to treat ME/CFS patients.
  • The clinical trials must include severely ill, homebound patients, and must be overseen by an advisory team of ME/CFS specialists and researchers who best know the needs of this patient population.

3. Accurate Medical Education and Clinical Guidelines

The Centers for Disease Control and Prevention (CDC) must immediately discard its erroneous and outdated information related to ME/CFS and replace it with accurate medical education and clinical guidelines. The guidelines must be based on the most recent scientific information and the practices of ME/CFS experts, and be preapproved by a panel of recognized disease experts.

Rationale

It is morally reprehensible and medically unethical for the CDC to continue to disseminate erroneous and outdated information that can hurt patients. In spite of the findings of the 2015 Institute of Medicine (IOM) report, the CDC still includes references to psychological theories and treatments, such as GET (graded exercise therapy) and CBT (cognitive behavior therapy), even though the IOM report discredits the idea that this disease is psychological. This perpetuates medical confusion and puts ME/CFS patients at significant risk of harm. To address this situation, the CDC must immediately issue new ME/CFS medical education and clinical guidelines in the following manner:

Details
  • The CDC must immediately revise their ME/CFS medical education and clinical guidelines to replace erroneous and outdated information with updated, correct information based on the 2014 IACFS/ME Primer, and the IOM report, supplemented with the August 2015 recommendations from the CFS Advisory Committee. The IOM report stated that ME/CFS is not a psychological disease, yet much of the influential research on ME/CFS has focused on psychological factors. A 2015 NIH Pathways to Prevention (P2P) Report called for the retirement of the Oxford case definition because it is overly broad and includes people with other conditions including mental illness. Yet findings using the Oxford case definition are still being referenced in CDC material, even in new medical education information from the CDC and other medical education providers. This encourages an unethical focus on psychological factors and treatments, such as GET and CBT.
  • All medical education content must be approved by recognized ME/CFS expert clinicians, researchers and patients before publication.
  • The CDC must actively reach out to the larger medical community and to medical education providers to disseminate this updated content while simultaneously removing the erroneous information and material.

4. HHS Leadership, Oversight and a Serious Commitment to Urgently Address ME/CFS

HHS must demonstrate a serious commitment to ME/CFS commensurate with the severity and prevalence of the disease. This commitment must specifically remove all internal HHS impediments  to achieving rapid progress and must be implemented with the full and open collaboration of, and accountability to ME/CFS experts and patients.

Rationale

HHS’s lack of leadership and commitment to ME/CFS for the past thirty years has resulted in the neglect of a serious neurological disease and the abandonment of 1 to 2.5 million disabled Americans. HHS’s neglect has stalled research and drug development; disincentivized academic centers and pharmaceutical companies; and led to disbelieving medical providers, which has, in turn, resulted in a stigmatization of patients and abysmal, often harmful, clinical care. HHS’s short-sighted policies and unilateral actions have destroyed the scientific and medical infrastructure for ME/CFS that could have advanced research and proper care for patients. HHS must now act with a commitment, focus and sense of urgency regarding all aspects of its response to this disease in order to remedy the situation, as patients are losing their lives to this disease, many having spent years, even decades, too weak to function. In doing so, HHS’s decision-making process can no longer take place behind closed doors; HHS plans for ME/CFS must be developed and executed in conjunction with those who intimately know the disease: ME/CFS experts and patients.

Details
  • HHS Leadership, Oversight and Commitment
To ensure rapid progress, HHS must immediately accept the CFSAC Aug. 2015 recommendation of appointing a “senior-level cross-agency leader (“czar”) with the authority, position and fiscal responsibility required to coordinate, develop, implement, and monitor a broad strategic cross-agency response to this disease through open and collaborative engagement of both internal and external stakeholders.” The plan must be fast-tracked and must include long-term goals and milestones, as well as criteria for measuring progress. The currently established Trans-NIH ME/CFS Working Group does not address these needs, as it has no coordination of a cross-agency strategic response. That response must address not only research, but also drug development, epidemiology, medical education, access and quality of medical care and public awareness.
  • NIH Leadership, Oversight and Commitment
Given the multi-systemic nature of ME/CFS, it is crucial that each relevant Institute within the NIH must immediately put forth its own publicly-stated strategic and financial commitments and goals. To ensure coordination across the Institutes and to make rapid progress on an NIH research strategy, the Trans-NIH ME/CFS Working Group must continue. Finally, to ensure we make fast progress in the context of the NIH’s organizational structure, ME/CFS must be assigned to an NIH Institute right away. Given ME’s clear neurological dysfunction, the disease must be placed in the National Institute of Neurological Disorders and Stroke (NINDS) as recommended by CFSAC. 
  • CDC Leadership, Oversight and Commitment
To demonstrate their serious commitment to urgently address ME/CFS, the CDC must restore the ME/CFS budget which was eliminated in their 2017 budget justification submitted to Congress.  Additionally, the CDC must provide funds to conduct epidemiological studies to reassess prevalence, prognosis and risk factors. In doing so, the CDC must use the Canadian Consensus Criteria, as does the NIH in its current intramural study. Further, the CDC must implement a mechanism to ensure that a panel of recognized disease experts are involved in final decision making on all aspects of the CDC’s efforts related to ME/CFS.

Closing Note: These demands could change if there is any new information coming from the NIH, the CDC or HHS before the date of the #MillionsMissing demonstration on May 25, 2016.

Contact
To learn more, please contact
info@MEAction.net

###

Institute of Medicine of the National Academies. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Institute of Medicine of the National Academies. Final report May 2015. http://www.iom.edu/Reports/2015/ME-CFS.aspx

Institute of Medicine of the National Academies. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Institute of Medicine of the National Academies. Final report May 2015.  http://www.iom.edu/Reports/2015/ME-CFS.aspx

2015 Pathways to Prevention Report http://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf
NIH Funding for Research by Disease.  https://report.nih.gov/categorical_spending.aspx

Mitchell WM, “Efficacy of rintatolimod in the treatment of chronic fatigue syndrome/ myalgic encephalomyelitis (cuffs/me).” Expert Review of Clinical Pharmacology. April 2016.http://www.ncbi.nlm.nih.gov/pubmed/27045557

Fluge O, Bruland O, Risa K, Storstein A, Kristoffersen EK, Sapkota D, Næss H, Dahl O, Nyland H, Mella O. “Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study.” Plos One Oct 2011; 6(10): e26358.http://dx.doi.org/10.1371/journal.pone.0026358

Montoya M, Kogelnik A, Bhangoo M, Lunn M, Flamand L, Merrihew, Watt T, Kubo J, Paik J, Desa M. “Randomized Clinical Trial to Evaluate the Efficacy and Safety of Valganciclovir in a Subset of Patients With Chronic Fatigue Syndrome.” Journal of Medical Virology August 19, 2013. 85:2101–2109http://dx.doi.org/10.1002/jmv.23713

International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. “Chronic Fatigue Syndrome Myalgic Encephalomyelitis: A Primer for Clinical Practitioners 2014 Edition.”  2012, revised 2014.http://www.iacfsme.org/LinkClick.aspx?fileticket=iD3JkZAZhts%3d&tabid=509

Institute of Medicine of the National Academies. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Institute of Medicine of the National Academies. Final report May 2015 . http://www.iom.edu/Reports/2015/ME-CFS.aspx

2015 Pathways to Prevention Report – Page 16 http://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf 

Institute of Medicine of the National Academies. “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Institute of Medicine of the National Academies. Final report May 2015 http://www.iom.edu/Reports/2015/ME-CFS.aspx Page 1-3, 15-16, 27-31.

U.S. National Institutes of Health. Office of Disease Prevention. “Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. December 9-10, 2014. Executive Summary.” National Institutes of Health. Office of Disease Prevention. Final Report June 16, 2015 http://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf

U.S. Department of Health and Human Services CFS Advisory Committee. Advisory Committee Meeting Recommendations. August 18-19, 2015. Last accessed September 12, 2015 http://www.hhs.gov/advcomcfs/recommendations/2015-08-18-19-recommendations.pdf

U.S. Department of Health and Human Services CFS Advisory Committee. Advisory Committee Meeting Recommendations. August 18-19, 2015. Last accessed September 12, 2015 http://www.hhs.gov/advcomcfs/recommendations/2015-08-18-19-recommendations.pdf

Centers for Disease Control and Prevention. Justifications of Estimates for Appropriations Committees. Fiscal Year 2017. http://www.cdc.gov/budget/documents/fy2017/fy-2017-cdc-congressional-justification.pdf Page 15.

Friday, May 6, 2016

Patients with Chronic Illness Rally to Raise Funds, Awareness, and Hope

Note: For some easy ways to participate in May 12 Awareness Day, please see May 12th is International ME/CFS, Lyme, and FM Awareness Day!

This article first appeared on Huffington Post. Reprinted with permission.

By Stephanie Land

Ron Davis, best known for helping to spearhead the Human Genome project, posts a selfie where he’s wearing a cape and a pair of briefs over his regular clothing. Hands on hips in the manner of superheroes everywhere, Davis mugs for the camera, happy to be ridiculous – for a cause.

Davis is the Board Director at the Open Medicine Foundation, a nonprofit set up to raise funds for the research he does with a team (including three Nobel laureates) at the Stanford Genome Technology Center. The Open Medicine Foundation has raised 4 million dollars since 2012 to help combat modern illnesses with elusive etiologies and challengingly complex presentations, such as Lyme, fibromyalgia, myalgic encephalomyelitis. His interest in studying myalgic encephalomyelitis or ME/CFS is to save his son Whitney’s life.

“ME/CFS symptoms include but are not limited to severe post-exertional fatigue, sleep dysfunction, cognitive impairments, and muscle/joint pain,” explained Stacy Hodges, a 32-year-old who is an advocate and activist for awareness of her condition. “After countless doctors' appointments, many individuals with ME/CFS quickly deplete their life savings but remain unable to work. There is very little hope for a cure, due to the government's lack of commitment to the disease, which results in almost no funding dedicated to medical or scientific research.”

In a public plea in December of 2015, Davis wrote, “My son Whitney woke me this morning to inform me that he is dying. He did not say he is dying – he cannot speak. He did not write he is dying – he cannot write. He used scrabble tiles to spell out his message.”

Whitney Dafoe’s story broke into the mainstream media after Ron Davis, his wife Janet Dafoe, and their daughter Ashley Davis held fundraisers to raise money to fund Ron’s research after his grant applications to the National Institute of Health were denied. “This tells me I am running out of time,” Ron went on to say. “I must find out soon what is causing the disease and how to cure it. I know I’m not the only one working on this disease, but there are too few researchers, too few medical specialists, too little research funds and too many patients.”

Undies on the Outside,” a fundraiser set up for the Open Medicine Foundation, is only one of many springing up currently as ME Awareness Day on May 12th draws closer.

An idea for a protest began to form, and Hodges started to articulate what that would look like. “Understandably, the idea of a protest was met with some initial resistance and hesitation because many patients are just way too sick to get out of bed, much less attend a protest,” said Hodges in an email interview. “The co-founders of #MEAction supported the idea of activism and together we launched the first step of many: our protest in Washington, D.C.”

As the group began planning, and posting about the protest on social media, the idea for a #MillionsMissing campaign started to form. “#MillionsMissing speaks to the invisible nature of our illness,” said Hodges. “Millions of patients are missing from their careers, schools, social lives and families due to the debilitating symptoms of this disease.” There are also millions missing in funds to research the disease, and millions of healthcare workers lacking proper medical training about ME/CFS.

On May 25th, several groups across the nation will stand (or sit in wheelchairs, lie on stretchers or the ground, depending on their severity of the disease) outside Departments of Human and Health Services to protest a lack of funding to research their disease. So far, there are protests taking place in Washington D.C., Seattle, San Francisco, Atlanta, Dallas, and London, England.

The combined efforts, fronted by Hodges, have been incredible. Many patients participate in several conference calls a week, sometimes using up their energy reserves to talk, plan, organize, and formulate the protest’s demands.

Understanding that many patients with ME/CFS won’t be able to attend the protests in person due to being house- or bed-bound, there are several virtual protest options listed on their website. People around the world can mail a pair of shoes to represent one of the millions who are missing from their once-active lives. On the day of the protest, supporters are also encouraged to place a pair of shoes on their front stoop or driveway with a sign explaining who they represent. “At the protest, we will be displaying many pairs of empty shoes sent in from sick and disabled patients around the world, many homebound and bedridden,” added Hodges. “The haunting display of empty shoes will represent the #MillionsMissing who make up our ME/CFS community.”

Hodges reached out to The Blue Ribbon Foundation, the nonprofit behind the documentary Forgotten Plague, which features the Davis-Dafoes, showing a rare glimpse into the room where Whitney has lived for over three years.

The Blue Ribbon Foundation offered a special Congressional DVD Pack through the Forgotten Plague website, and joined efforts to attend the protest in D.C.. “Real change is about engaging with the institutions in society that hold the power,” said Ryan Prior, who wrote and co-directed the film. “We need policymakers to watch a film that conveys the human struggle, scandalous politics, and world-changing science of the ME/CFS story. By using the film and the protest to build an increasingly unified front on Capitol Hill we can tell our story in a way we've never done before to the audience we need most.”

The focal point in each of these campaigns, protests, and fundraisers aligns with Ron Davis’s sentiment: a search for ‘what I can do to start a movement’.

It’s a movement towards recognition, for people to see how many people are suffering at home in dark rooms, behind closed doors, imprisoned in a body that can no longer function enough to perform daily self-care tasks. “Many patients have no caregivers at all, and they are struggling to get food in their refrigerators or just get to the doctor,” said Hodges. “Many patients are too sick to fight for themselves. Something has to be done, because the status quo is unacceptable. The patients can not live like this. I hope the public recognizes that this is a growing movement.”

It’s a movement with a groundswell of fundraising, advocacy, and groundbreaking medical research that has the potential to help ME/CFS patients find their feet.

____________________

About the author: Stephanie Land is a writing fellow for the Center for Community Change, and a board member at the Blue Ribbon Foundation. Her work has been featured through The New York Times, The Washington Post, and The Guardian. She lives in Missoula, Mont., with her two daughters. Read more of her story at stepville.com or follow her @stepville.

Thursday, April 21, 2016

Reductio ad Absurdum: A Webinar with Dr. Avi Nath

On April 21, Solve ME/CFS Initiative hosted a webinar with Dr. Avindra Nath, NINDS intramural clinical director, and the lead investigator of NIH's ME/CFS study. (For those who missed it, the webinar is available on the Solve CFS Youtube channel.)

The first half hour of the talk centered on the NIH study: how it will be structured, how patients will be selected, and how they will be tested. (This information has been presented elsewhere on this blog, so I will not summarize it here.)

In the second half hour, Dr. Nath responded to questions from the listeners, which Dr. Zaher Nahle, Solve ME/CFS Initiative's Vice President for Research and Scientific Programs, was kind enough to deliver.

The first question put to Dr. Nath concerned bias among people involved in the NIH study. The answer was "I can't give a litmus test to every researcher."

There was clearly a misunderstanding about the scope of the question, so Dr. Nahle rephrased the question to ask specifically about bias among the NIH staff. Once again, Dr. Nath responded by reducing the question to absurd proportions, claiming that he didn't have time for "psychological games."

Neither did Dr. Nath have time to talk to Drs. Fluge and Mella. "I can't talk to everyone who has done a study," is how he answered that question. Of course, Fluge and Mella aren't "everyone." The third phase of the NIH study will involve testing immunomodulatory drugs, one of which may be rituximab. Nobody knows more about the effects of rituximab on ME/CFS than Fluge and Mella, so one would think that a consultation would be prudent.

There was not much time for further questions, but I have no doubt that Dr. Nath would have sidestepped those as well.

Reductio ad Absurdum

In rhetoric, the device known as reductio ad absurdum is employed to avoid addressing an opponent's argument. By reducing an argument to absurd proportions, not only is a pall cast over the opponent's point, the discussion effectively comes to a halt.

Dr. Nath has demonstrated this technique on prior occasions.

During the NIH telebriefing, Charmian Proskauer, President of the Mass CFIDS/ME/FM Association asked if 40 patients were too few for the study. Dr. Nath replied "If you need to have a thousand patients to find something, it probably isn't worth finding." There are numbers, perfectly reasonable numbers, between 40 and 1000. One hundred, for example, is a reasonable number. But, by exaggerating Ms. Proskauer's argument, Dr. Nath neatly sidestepped the question of whether we really needed another pilot study.

In like fashion, "I can't talk to everybody" sidesteps the question of whether Dr. Nath will confer with two researchers involved in the only current large-scale study on a drug that has shown promise for ME/CFS patients.

As for the question of bias, "I can't do a litmus test on everybody," "I can't read minds to see who is biased," and "I don't have time for psychological games," are reductio ad absurdum arguments as well. Nobody has asked Dr. Nath to read anyone's mind. We have simply questioned the appropriateness of three (only three) staff members, two of whom are in key positions.

The true intent of reductio ad absurdum responses is to belittle the opponent. When this type of rhetorical strategy is employed, the person using it is not only seeking to avoid replying to a point, but to diminish the person making it. (Reductio ad absurdum is only one step removed from ad hominem attacks, which belittle the person directly. Both are considered logical fallacies.)

The questions posed to Dr. Nath today were phrased respectfully. They addressed concerns that should be taken seriously by anyone conducting a study at public expense. Public scrutiny is to be expected under these circumstances, and yet Dr. Nath appears to believe that we should not be looking at who performs the study, or examining the protocol, or, in fact, asking any questions at all.

Our tax dollars are paying for this study. It is not only our right to know what the federal government is spending our money on, it is an ethical duty on the part of the government to make full disclosure. Above all, a clinical trial should never be conducted in secrecy, for obvious reasons. And a trial that has even a remote possibility of bias or mismanagement should receive even more scrutiny. That is how good science is conducted.

Researchers who maintain an attitude of scorn towards the subjects of their studies rarely produce good research. And researchers who do not bother to thoroughly investigate prior as well as current research uniformly produce bad research. While Dr. Walitt has been open about his bias (even while denying that he has one), it is becoming increasingly clear that Dr. Nath's dismissive "I can't be bothered" attitude will be equally problematic in this study.

Sign the Petition: ME is not MUPS - Dutch Patients Need Your Help!

On March 29th 2016, the Dutch Health Council (the advisory body to Dutch Parliament) announced the names of the members of a newly formed Committee that has the important task to write an advisory report on the state of the scientific knowledge about ME for Dutch Parliament.

The idea for the Committee was initiated by ME patients themselves, who, after suffering decades of medical ignorance, requested acknowledgement by the government, as well as a scientific review of ME to support appropriate diagnosis and treatment.

As is often the case when a government has vested interests in maintaining the status quo, their efforts were co-opted. Half of the Committee members view ME as a psychosomatic illness. Some openly recommend GET and CBT as legitimate treatments for ME. Meanwhile, none of the international experts requested by Dutch ME patients has been included.

The petition “ME is geen SOLK”, which translates as “ME is not MUPS/Medically Unexplained Physical Symptoms” has been launched to redress the inequity of the Committee's composition:

https://petities.nl/petitions/me-is-not-mups-change-dutch-health-council-committee-and-adhere-to-the-advisory-report-assignment?locale=en
The purpose of the petition is to support Dutch patients in their request for an accurate scientific review, untainted by biopsychosocial theories. 

Let the Dutch Health Council know that ME (ICD G93.3) is not MUPS, nor it is a somatoform disorder, neurasthenia, functional syndrome or unexplained fatigue.

Please sign the petition!!

Following is some background information. 

Reprinted with permission from the Dutch ME patient Group; ME is not MUPS (ME is geen SOLK).

For more information writeMeisgeensolk@gmail.com

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Background info

That the Dutch Health Council was asked to take another look at the state of the scientific knowledge with respect to ME was a direct result of a well known Dutch Citizen’s Initiative “Erken ME”/Recognize ME. 

This group of very ill ME patients was fed up with (the status quo and) the total lack of care and lack of knowledge about this disease with health care professionals in the Netherlands, the total lack of
biomedical research in their country, as well as the huge influence of CBT/GET psychologists in the Netherlands (now joined by a growing number of psychologists who stand behind and actively promote MUPS diagnoses, theories and treatments for this patient group). 

ME patients really have no place to go for care, they are only referred to CBT/GET treatments. The Dutch Health Council report in 2005 did not help, it was one of the reasons the CBT/GET paradigm has become so strong in the Netherlands, (as it is in the UK), almost all reasearch funds after the 2005 Health Council report was presented to Parliament went to CBT studies from Nijmegen/Radboud University, who over the years have worked closely with the PACE authors. 

It prompted the Dutch Citizens’s Initiative (Burgerinitiatief) “Erken ME”/”Recogize ME” in 2011. It took more than 2 years. More than 56,000 signatures were collected and presented to Parliament in 2013. They were able (together with 2 ME experts, Prof. DeMeirleir and Dr. Klein, who are now not on the Committee) to convince Parliament members that something needed to change for ME patients in The Netherlands, that the scientific knowledge about this disease justifies a paradigm shift, in care and biomedical research. The result, an official request on April 9th 2015 from Parliament to the Dutch Health Council for a new advisory report on the state of the scientific knowledge with respect to ME.

Patient organizations and the Dutch Citizen’s Initiative urged the Dutch Health Council to seek international expertise for its Committee, as true expertise on this disease is lacking in the Netherlands. However, none of the international experts that were suggested to the Dutch Health Council were invited to join the Committee (even though these experts had already said to be willing to participate). 

Now almost half of the Committee members are professionals with a clear SOLK/MUPS and CBT background. One member is a well known Dutch psychologist/“PACE colleague” from Nijmegen/Radboud University, head of the NKCV (Nijmegen Expert Centre for Chronic Fatigue). 

They, for example, provided the protocol for CBT that was (partly) used in the PACE trial, and wrote the well known “Where to PACE from here” commentary that was published together with the original PACE study in 2011 in the Lancet. This commentary included some false/exaggerated “recovery” claims, which was pointed out in a recent letter from more than 40 experts to the Lancet 

The 3 other members that patients are concerned about have a clear MUPS background. CFS, Fibromyalgia and IBS are mentioned as examples of MUPS (SOLK), by them. MUPS is becoming a new “diagnosis”, claimed by psychologists. MUPS “diagnoses” and treatments are linked to the well
known underlying biopsychosocial model for MUPS (and CBT), which means patients need CBT and are referred to Mental Health Institutions to get those treatments. A nation wide project is set up (funded by health care insurers) to implement this on a large scale. The SOLK (MUPS) multidisciplinary and Somatoform Disorders guideline in the Netherlands, as well as a SOLK (MUPS) General Practitioners’ Standard (one of the Committee members was involved in writing both), lists CFS as an undifferentiated somatoform disorder (ICD F45). The Dutch “CVS”/CFS Guideline (now considered part of the SOLK guideline) was based on the NICE UK Guideline for CFS. 

Patient organizations have refused to authorize it, yet CBT is promoted as the first choice of treatment for ME patients in the Netherlands. Other professionals with a SOLK (MUPS) background sometimes refer to CFS as a functional syndrome. The NKCV/Expert Centre for Chronic Fatigue (head Hans Knoop, a Committee member) also in several documents describes CFS as an undifferentiated somatoform disorder. The underlying theory of treatment options suggested by these professionals (CBT/GET), the biospychosocial model, is a theory that has never been proven, yet MUPS/SOLK/CBT professionals in the Netherlands claim that it is evidence based and often curative. Besides 4 MUPS/CBT members there are 4 other doctors on the Committee, only two have some experience with ME patients, others don’t.

This is why in the Netherlands patients feel so strongly about using the appropriate name and ICD classification for their disease; ME, ICD G93.3. There is a need to get ME out of the CFS umbrella, as suggested by the ICC authors in 2011 and the CFSAC (chronic fatigue syndrome advisory committee) in its recommendations to the HHS in 2015 (recommendations that were based on the IOM and NIH/P2P reports). 

The name CFS is linked to inappropriate classifications for this disease and therefore gives a misrepresentation of what this disease is, i.e. the state of the science says. In their last report in 2005 on “CVS”/CFS the Dutch Health Council Committee also made a clear reference to both ICD F45 (somatoform disorders) and F48 (neurasthenia) as possible classifications for CFS (page 37). But then made the argument that too much focus on the issue of classification was not that important or helpful with respect to relevant treatments.
On page 37 of the 2005 Dutch Health Council report it states: “The Committee argues, however, that the place of CFS in a classification system says nothing about the nature of the illness and that the CFS case definition is no more than a description of a pattern of symptoms that cannot have any bearing on a discussion about whether it is ‘neurologic or psychiatric’. Furthermore, the Committee does not consider such a discussion to be helpful as far as the treatment of patients is concerned.”. An all too familiar argument still heard today by MUPS/CBT/mental health professionals working with CFS patients: it does not matter if this disease is physical or psychosomatic, they have a treatment that works, so let’s focus on that; …. CBT/GET.

The new report of the Dutch Health Council will be highly influencial with respect to health care policy for ME patients in the Netherlands in the next decade (and patients really were hoping for change to get the care they need an more biomedical research so that in time there might be a cure!). For ME patients in the Netherlands it is unacceptable that 10 years after the 2005 Health Council report, with all the available scientific knowledge about this disease and the clear assignment from Parliament to write an advisory report on the current state of the scientific knowledge about ME, for the Dutch Health Council to select a Committee with members that still stand behind the MUPS/CBT (biopsychosocial) theories (and classifications of CFS as MUPS, somatoform disorders etc.) when dealing with this neurological, chronic complex multisystem disease (ME, ICD G93.3).
Hence, the petition “ME is geen SOLK” (ME is not MUPS) was launched.

Patients cannot wait another decade for change! Time to put the biopsychosocial model behind us. We hope you will help Dutch patients by signing and sharing the petition (link).

If you have already signed, thank you, we hope you will continue helping us by sharing the petition link and the concerns of the Dutch patients (a topic relevant to all ME patients worldwide) on your
website or via social media.

Thursday, April 14, 2016

Visiting Whitney Dafoe: a dear friend who suffers from severe ME/CFS

Reprinted with the kind permission of Stephanie Land.

A version of this post first appeared on the author’s website at www.stepville.com
.

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By Stephanie Land

A couple of months ago I discovered my friend Whitney had been bed-bound for over three years. His dad, Dr. Ron Davis, a scientist involved in the Human Genome Project, focused all of his time and effort in researching his son’s disease. I discovered Whitney had been featured in a documentary called "Forgotten Plague," where it showed him bent over in bed, unmoving, and incredibly thin. The sight brought me to tears. I wanted to help, and thought, as a freelance writer, I could at least publish articles about Whitney to raise awareness, and decided I needed to see his house in person. My friends didn’t seem to understand.

I told someone about the time Whitney and I had together, and said it was the perfect summer romance: two kids, in Alaska, playing in fields with muskox and caribou.

“We had a month. Exactly a month. And he was leaving and we’d never see each other again,” I said. “So we had this month of intense connection without worrying about whether or not it’d turn into a relationship. We could just be with each other, and love each other as much as we wanted without any stress over the future.”

In going to visit a friend who’s sick, and telling people I’m doing so, most of the reactions are sad moans and frowns. When I said I wouldn’t be able to see him, they’d cock their head to the side a little and furrow their brows in confusion.

“He can’t tolerate anyone being in his room,” I tried to explain. “He’s too sick. He’ll crash if his brain is forced to process who I am and why I’m there. His body would shut down.”

“But I thought he only had chronic fatigue syndrome?”

I barely understood the science of it, or how it worked. The only way I could think of explaining it was that, even though he’d spent most of his time in bed for the last three years, it was more like he’d been resting with his eyes closed.

“Imagine how you’d feel if you hadn’t had any restorative type of sleep in three years. His entire body is so exhausted, any amount of energy output he’s not prepared for shuts him down to a hibernation-type of state.”

“From chronic fatigue syndrome?”

And so it goes. I can’t imagine what it’s like for patients to explain their daily lives to friends and family or doctors.

It was late at night when I pulled into the driveway of the house where Whitney grew up. Even though his parents, Janet and Ron, had left the door unlocked for me, I still felt like a stranger creeping into the house. It’d been over 13 years since I’d seen Whitney, 10 or 11 since we’d talked on the phone, and over a year since I’d received any kind of message from him. I walked in to find Ron in the kitchen. He smiled so broadly at me, I hugged him.

Ron and Janet’s nightly routine consists of quietly shuffling in and out of the back room where Whitney lives. The room he never leaves. He has to be prepared for them to enter the room, has to know when to expect them. Once inside, they work quickly to meet his needs then leave him be. On my first night at the house, I watched all of this with a mix of awe and helplessness.

When I finally went to sleep in the living room, I could still hear Janet moving around in the kitchen.

I got up the next morning and followed Ron to his office at Stanford, which sits above a laboratory where dozens of scientists, students, and even three Nobel laureates work full-time to research ME/CFS. We walked through the building, and he pointed out work stations, robotic machines, and lab areas. As a writer, I was in a foreign land – math and science were areas I tried to avoid in college.

But sitting across from Ron at his desk upstairs, I shied a little, knowing I sat with a celebrity. Ron leads the Open Medicine Foundation as the scientific advisory board director, and is the Director of the Stanford Genome Technology Center. He is recognized as one of the leading scientists studying ME/CFS, and he fights daily to fund his research. “One of the scientists who works for me is retired, and volunteers their time,” he said. “What we need the most is funding.”

I looked down at Ron’s shoes. Whitney can’t tolerate seeing any kind of lettering at times, and Ron and Janet have to be careful to not wear clothing with any logos. On the front of Ron’s North Face, black sneakers, he’d carefully blacked out the lettering with permanent marker. It was the smallest effort that speaks to how he and Janet work diligently, changing every aspect of their life, tirelessly trying to find a cure for their son, and millions of others who suffer.

Tibetan prayer flags hang over Whitney’s door, above the porch, and all over the back stoop leading from Whitney’s room. When Janet took me out back to look at the forget-me-nots and African daisies Whitney had planted, she said he might be able to see me from the window. I got nervous and hopeful at the same time. I tried not to look in the direction of his room, but after a while I couldn’t help it. He’d planted my favorite flowers all over the yard, and they, along with the columbine he’d planted for his mom, were some of the only ones in bloom. In the backyard, Janet and I talked in whispers. I caught myself staring at the the back bedroom, at the walls that encased him. At the house that keeps him safe but imprisoned at the same time.

When I talk to Janet, I always tell her to send Whitney my love however she can. I can’t wait until the day I’m able to do it myself.

To donate to help Ron’s efforts with the Open Medicine Foundation, and further his much-needed research for a cure, go HERE.

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About the author: Stephanie Land is a writing fellow for the Center for Community Change, and a board member at the Blue Ribbon Foundation. Her work has been featured through The New York Times, The Washington Post, and The Guardian. She lives in Missoula, Mont., with her two daughters. Read more of her story at stepville.com or follow her @stepville.
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