What a year! Who do you want to thank? The Unofficial 2015 ME/CFS patient awards for...

[Jo Best]

The 2015 award for Best Chili ME Fundraising has to go to Mady Hornig and Ian Lipkin and their team. Not only did they produce an awesome Holywood-quality video trailer for the event, they ingested an impressive variety of hot chilis to raise the funds needed to get their ME research underway.

They have demonstrated incredible dedication to us and to their research, and I don't think we can ever thank them enough for believing in us.

I agree, definitely star quality. My award for Best UK Research Team Chilli ME Challenge goes to Simon Carding and team at the Institute of Food Research, based at Norwich Research Park, hub for the Invest in ME Centre of Excellence for Translational Biomedical ME research, where the strategy is underway by investigating the role of the gut microbiome in ME. The IFR team Chilli ME Challenge video is embedded in this post - http://news.ifr.ac.uk/2015/07/the-heat-is-on-for-the-chilli-me-challenge/

(Mady Hornig spoke at a meeting at Norwich Research Park in October - http://www.investinme.org/IIME-Newslet-1509-01.htm )

 

[Simon]

A 2015 Award for great journalism and a moving patient story goes to Lucy Mayhew
for her recent piece in the Daily Telegraph

Living with chronic fatigue [Syndrome/ME!]: How I wish my friends would treat me
Lucy didn't like the title either but the DT wouldn't change it (editors, not writers, write the headlines) and it's a wonderful and moving article that leaves people in no doubt about the agony of ME. Compassion goes a long way, she says.

Living with chronic fatigue: How I wish my friends would treat me (Telegraph) | Phoenix Rising ME / CFS Forums

OK, I'm done now, Happy Christmas to everyone! I'm off on the usual round of parties and revelry... If only.

#2015MEAwards ​

 

[CateK]

My Award for Activist of the Year goes to Jennie Spotila. Yay! for all she has done.!

 

[Jo Best]

I nominate Invest in ME supporters for best all-volunteer fundraising team. They are very enthusiastic. They even have a subsection, Let's Do It for ME.

Thank you Tom, and for all your amazing advocacy and support of others' work. Let's Do It for ME - http://ldifme.org/ - is a community campaign created by patients in July 2011, aiming to raise awareness of Invest in ME charity's proposal to establish a Centre of Excellence for ME (the first of its kind in UK/Europe and involving translational biomedical research, patient care, medical education) and to raise funds for the research strategy to get underway.

Over £600k has been raised so far, funding research on the role of gut microbiome (currently in progress) and on B-cells (prerequisite to a UK clinical trial of rituximab as announced by Invest in ME on 6th June 2013 and kindly supported by Jonathan Edwards - a paper on the initial study was published this month and is discussed on another thread).

Plans for the appointment of a specialist for the clinical arm of the Centre of Excellence were delayed by NHS reforms, and the research strategy was enabled to begin thanks to Dr. Amolak Bansal (Surrey) and Dr. Saul Berkovitz (London) and their patients providing the samples required.

Current fundraising targets are £200k for the gut microbiome research and £520k for B-cell / Rituximab Research. We are immensely grateful for the charitable support of the Hendrie Foundation. Patients have found an amazing range of ways to raise funds from their own homes and even from nursing homes whilst gravely ill and tube-fed, and families, friends and carers have been equally amazing with their support and fundraising initiatives.

There's plenty of room aboard Team Let's Do It for ME. Launched by people with severe ME, it's a very DIY campaign, as well as totally inclusive of all ages and level of illness severity to the fittest of our willing wellies. There are various ways to help, including raising funds for free, listed on the site, and then of course, there is Invest in ME main website and their microsites for the rituximab research, conference and colloquium.

Thank you Tom and best wishes to everyone for the year ahead.

 

[rosieness]

I’d like to nominate all of the unsung heroes who believe in us and especially all those special people who walk beside us, sharing the load - helping to make it a little bit lighter.

 

[Skippa]

I wouldn't like to speculate which individual or group should get the Grinch Who Stole Christmas award.

 

[alex3619]

I think we could use a Quiet Survivors award, for all those with severe and very severe ME who are too sick to advocate effectively. They endure things the average person cannot even dream about, even in their worst nightmares.

 

[leela]

I think we could use a Quiet Survivors award, for all those with severe and very severe ME who are too sick to advocate effectively. They endure things the average person cannot even dream about, even in their worst nightmares.

This one made me outright cry.

 

[TiredSam]

I award the golden raspberry for most odious pantomime villain to Peter White for trying to maintain his deceptive schemes to the very end even while being booed and hissed off stage by the surprising but welcome late arrival of an audience full of scientists.

 

[SB_1108]

I think Vanessa Yeuk Lin Li deserves a Legacy Award.

Just some information about Vanessa for those unfamiliar...

Vanessa was the driving force behind the crowd funding campaign for the Microbe Discovery Project.

Vanessa took her own life on February 4th because of the pain she suffered daily. Her 15-year struggle with ME had taken an immeasurable toll on her and the family. Over the years she suffered from migraines, seizures, fits, stupors, personality changes, muscle cramps, and angina pains. She would be bed-ridden or housebound for months on end, requiring help for things as basic as going to the toilet, and was wholly dependent on her mother as her full-time carer.

She said she could not go on anymore without any cure and she felt ending her life was simply a practical solution. She wanted the world to know that she ended her own life and she wanted her death to serve something. She wanted to spread awareness of the truth of ME, and the lack of research into the illness as a result of neglect from medical authorities worldwide.

She wanted her body to be donated for the purpose of researching ME and her family arranged for that to happen.

Vanessa's legacy is a reminder of the profound impact of this disease on patients' lives.

 

[M Paine]

The 2015 Award for ME/CFS Academic Institution goes to Columbia University.

Thank you Lipkin, Hornig et all, bring on 2016!

#my2015MEawards

 

[Kati]

The 2015 Award for ME/CFS Academic Institution goes to Columbia University.

Thank you Lipkin, Hornig et all, bring on 2016!

#my2015MEawards

An award should also be given to Griffith University- National Center for Neuro-Immunology and Emerging diseases, Dr Sonia Marshall-Gradisnik and Don Staines' team. They have pumped out the papers this year and have been the only university to light their campus blue for May 12 Awareness Day.

 

[Simon]

The 2015 Award for exposing neglect in social services goes to Catherine Hale

Her telling Close to Collapse report based on an Action for ME survey, and archived in the Centre for Social Welfare Reform library, exposes not only how little care is available to people with mecfs who need it, but how badly they can be treated by social services because they have an illness that too many people don't think is 'real'.

M.E./CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a chronic disabling condition that can have a devastating effect on people’s lives. This interim report, based on findings from a survey carried out by the charity Action for M.E, demonstrates the shocking gap between the need for social care, and the provision of appropriate services, for adults in the UK with this disabling condition.

Authors: Catherine Hale was the lead author, others were Sonya Chowdhury, Clare Ogden and Emma Hypher.

Some highlights of the report, taken from her linked blog :Limited Capability: The politics of stigma with ME/CFS showing not just that people weren't getting the care they were entitled to, but often they were met with a dismissive attitude from the social workers whose job it was to help them.

So 97% of the 850 people with ME who took my survey needed help with 2 or more activities of daily living like going to the toilet, dressing or getting to a local shop. In terms of the Care Act, this means they met the main threshold of eligibility for social care in England.

Yet only 6% were receiving a social care package.

...In my survey with Action for ME, 58% of people who had a social care assessment said they didn’t think the assessor accepted their illness or disability as genuine. 38% of those who may have qualified didn’t ask for help out of fear that they would be judged as undeserving of help, not considered genuine, or simply they wouldn’t be understood when trying to explain the impact of ME on daily living. They said things like:

“The social worker told me that "everyone gets tired"

“The social worker said I should go swimming every week and do more exercise even though she could see I couldn't even stand up without falling onto the floor and my legs were going into visible spasms on that day.”

Phoenix Rising thread: 'Shocking' report exposes failing in ME social care Disability News Service

#my2015MEawards

 

[Gemini]

Who would you like to give an award to?

I'd like to give a 2015 Outstanding Leadership Award to Dr. Susan M. Levine for her excellent and inspiring work as Chair of the CFS Advisory Committee as well as her research collaborations with Dr. Ian Lipkin and his team at Columbia Univ

 

[Denise]

To all patients for getting this far through the year.
I think most outsiders have little concept of how difficult it is for patients to get through each day.

#my2015MEawards

Here's hoping 2016 has high points for each of us.

 

[Gemini]

I'd like to give a 2015 Outstanding Patient Advocacy Award to Donna Pearson who as our CFSAC Patient Representative has worked relentlessly on our behalf through the very difficult and complex IOM and P2P processes

 

[Gemini]

I like to give a 2015 Outstanding Legal Advocacy Award to Jeannette Burmeister for her extraordinary legal efforts to successfully secure and defend ME/CFS patient's rights

 

[Gemini]

I think most outsiders have little concept of how difficult it is for patients to get through each day.

True. As such...

I'd like to give 2015 Patient Volunteer Awards to all the patients who participated in ME/CFS research studies this year for their generosity and dedication to the cause knowing full well they would likely pay a price healthwise above and beyond what a healthy person pays for doing so.

 

[Simon]

The 2015 Award for Standing up for Transparency in (PACE) research goes to many academics on Twitter

The story began when 2015-Award-winner Prof James Coyne requested the data behind PACE's economic analysis paper, published in PLoS One - where publishing is conditional on making the data available to any researcher who wants it. Bizarrely, King's Collge, London decided to treat Coyne's request as a Freedom on Information request and refused it as 'vexatious'. This action provoked a twitterstorm of rebuttal from some of the biggest names in the Good Science movement, from Daniel Lakens to Brian Nosek, some of which are catalogued here:

https://twitter.com/i/web/status/677866470718619649

Of course, PACE had used this 'vexatious' defence to refuse data to patients before, but it seems this time they went too far.

Andrew Geldman, another Good Science leading light subsequently coved PACE problems in his Christmas Day blog, concluding with a quote from fellow Columbia statistician Bruce Levine "One of the tenets of good science is transparency.”

I've been following the Good Science movement for several years (Life Science research is in crisis, it's not just a mecfs thing) and was frustrated that mecfs research - even big, important studies like PACE - were allowed to get away with shoddy practices that were regularly pillioried in other fields. So it was a thrill to see the heavyweights taking an interest in PACE, at last.

Hat tip to Retraction Watch too:

https://twitter.com/i/web/status/679708256483160064

#my2015MEawards

 

[caledonia]

I nominate the ME Chili Challenge for the most creative and effective way to fund research.

Remember, the large anonymous donations (and all the small ones) wouldn't have happened if it weren't for the publicity of this campaign.