Prestigious Research Team Seeks Funding for ME/CFS Immune Biomarker Research – Deadline March 27!

Dear ME/CFS patients, friends, and family,

I am an ME/CFS Spanish patient, administrator and owner of the national Spanish ME/CFS research forum, and also a 3rd year medical student.

I have no relationship with ASSSEM or IrsiCaixa, other than as an individual supporter and patient. I do believe all of us in the ME/CFS community deserve that the data this team has found be expanded and published.

We’ve gotten the attention of a highly recognized international AIDS research team, IrsiCaixa. They performed a preliminary study which produced very useful results that could be used as possible biomarkers for ME/CFS, and that might open the field to further exploration of the immune aberrations in ME/CFS, and, perhaps, lead to new therapies.

If these preliminary results are confirmed in the new study they are willing to carry out, we will have a published double-blind cross-sectional study. With such a large sample, this will probably be published in a peer-reviewed international journal.

And we are only $9,000 away from making this real! So...

Please HELP in any way you can!

Best wishes to you all!

Sergio

_________________________________-

PROJECT: Characterization of immunological biomarkers in ME/CFS

(Read the entire project); (Original in Spanish)

IrsiCaixa, an internationally recognized institute for AIDS research, published a study in 2013 which they found alterations in subsets of both T and NK cells. Specifically they identified eight molecules associated with poor immune system function that could be used for diagnosis.

(For further information, read the article: "Spanish HIV Experts Give Aid to ME/CFS" by Joel Snowathlete on Phoenix Rising, April 2013)

They expanded this preliminary study, with the project called "Comparison of biomarkers in EM/SFC", for which a crowdfunding of 29.000 € was launched and achieved last year. (Click HERE to read more.)

The preliminary results obtained from this second comparative study using 193 participants and 20 healthy controls showed specific immunological abnormalities in ME/CFS patients, and identified two subgroups of patients, according to different combinations of NKCD57 and NK NKP46 cells. These subsets could be explained by reactivation of herpes viruses, according to the authors. They also found other interesting abnormalities worth studying further.

The next step in this project is to expand it!

The research team wants to:

1. Double blind the study,
2. Increase the number of the sample (1 healthy control per each 2 patients),
3. Use the more accurate Canadian Consensus Criteria for diagnosis and
4. Add new markers to be measured in the study, such as the percent of Perforin in NK and CD8 T cells and a much more in-depth study of the B lymphocytes family, among others.

How much do they need?

The total project is just $13,000. ($12,000 € or £8,700). They have already raised $4,000. So, only $9,000 is needed!

Who is making this project possible?

Patients (who else!) who have funded the project by paying for their own tests, and ASSSEM, a National Spanish non-profit NGO composed mainly of health professionals dedicated to ME/CFS and FM, are making the project possible. ASSSEM was and is the promoter of the previous and the current campaign -  they are the ones who got IrsiCaixa interested in us, and involved in this promising project, in the first place!

How to collaborate

1. Help spread the word!!!!

Share on social networks, post on ME/CFS platforms, publish the campaign on your blog, and tweet it.

2. DONATE

You can donate using Paypal or your credit card:

Go to the ASSSEM website, and click the yellow "Donar" button on the right, which appears about half way down the page when it first loads.

Wire transfer:

IBAN: ES0901828732100201553888
SWIFT/BIC: BBVAESMMXXX
Bank: BBVA;
Beneficiary: ASSSEM,
Concept: “Objetivo 12.000”

CAMPAIGN DEADLINE: March the 27th, 2015

More information on: www.asssem.org

Help the National ME/FM Action Network win $5000!

Thank you to everyone who voted!! The National ME/FM Action Network made it to the finals! It will now receive $5,000 and is eligible for a possible grand prize of $100,000 in January.  

___________________

You can vote once a day, every day, until the semi-finals are over on December 10. 

Voting is easy. Just sign in automatically with your Facebook account and click on Vote. (You can also sign in with your email.) 

The National ME/FM Network is currently in 19th place, up from 20th place yesterday. To boost them into the top rank vote HERE.

____________________

From the website:

Advancing Research in Canada for Myalgic Encephalomyelitis and Fibromyalgia

The NATIONAL ME/FM ACTION NETWORK is a Canadian charitable organization dedicated to Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) through support, advocacy, education and research.

The 2010 Canadian Community Health Survey (CCHS) conducted by Statistics Canada revealed that there were 411,500 Canadians diagnoses with ME/CFS and 439,000 with Fibromyalgia. The survey also revealed a high level of disability for patients with ME/CFS and FM as well as unmet health care needs. ME/CFS and FM are chronic and severely disabling illnesses. They are as disabling as MS and are more prevalent in Canada than breast cancer, MS and AIDS combined! People are frequently bedridden and become isolated from friends and family – invisible in their own communities. These illnesses are real; the people are real; and they need help NOW!

These illnesses do not discriminate. All races, men and women, rich and poor, adults and children can be afflicted. It is devastating when a child is forced to cope with such a disabling illness.

Currently there are no definitive biomarkers or treatment protocols for ME or FM. Diagnosis is made by comparing patient symptoms with diagnostic criteria, then excluding other possible causes of those symptoms. Treatments are merely a means to manage the symptoms. There is no known prevention or cure. Lacking these basic fundamentals has an enormous impact on our current community and the thousands of people still struggling to be diagnosed. It typically takes years to obtain a proper diagnosis and it’s known that early intervention increases the chance of recovery. We need more research now!

To date, minimal funds have been available resulting in little biomedical research in Canada for these illnesses. Our Canadian patient community are asking for and are in need of biomedical research and solutions. Internationally, patient groups are beginning to take a leadership role by organizing and fundraising to advance research. It’s time Canada takes a lead role in advancing research and shines a light on the severity and complexities of these illnesses.

With the proceeds from the Aviva contest, the National ME/FM Action Network will establish a research arm that will take on the challenge of advancing biomedical ME and FM research in Canada. This will require some legal and accounting expenses. We will unite Canada’s experts and assemble an advisory group, establish our research criteria, investigate the various research opportunities requiring funding, choose our first project and support the execution and reporting of its results in 2015. The research project will incur expenses for salaries for research personnel (postdoc and graduate students) to conduct the study and prepare a paper for publication, expenses for sample selection and participant coordination, cost of laboratory materials used, and charges for use of a facility’s equipment for analysis of the samples. Also a webinar is planned to share the results. We have several exciting research opportunities to choose from to pursue and complete in 2015 that will benefit not only Canadians but millions of people worldwide, today and in the years to come. To support our researchers, we will use a portion of the funds to complete an international investigation of options to make a biobank available for future Canadian research projects. We also use funds to engage our patient community to determine their preferences for future projects and to communicate our plans with them and the media. Additionally, we will work to build on our relationship with government to obtain long term funding for other projects and to increase their awareness of the 850,500 Canadians in need of their support. This will involve the expense of meetings, mailings and possibility the hiring of a grant writer. The Aviva funds will permit us to solidify the direction of research in Canada and make a significant contribution towards improving the lives of current and future ME and FM patients.

Aviva’s gift will help to us make a difference to the lives of many Canadians.

It will give us credibility in our quest for answers and solutions and hope for a better tomorrow.

VOTE HERE.

"Let's Blow The Lid Off This Thing!": ME advocacy group initiates national media campaign

To donate to the national PR campaign click HERE.

From ME Advocacy.org

Now Is the Time for a National PR Campaign for ME/CFS!

"HHS, NIH, fasten your seat belts and return your tray table to the upright position because it's going to be a bumpy ride:)" Susan Maier (NIH)

I'm sure Ms. Maier didn't realize just how prophetic her statement would become. ME patients are disgusted and disgruntled with the mistreatment perpetrated on this extraordinarily sick population by the NIH and CDC. We're mad as hell, and we're not going to take it anymore!

With FOIA access gained to internal documents from the IOM and P2P projects, the upcoming final P2P workshop, as well as upcoming IOM and CDC Multisite results, the time is now perfect for an all-out publicity campaign.

Let's Blow The Lid Off This Thing!

As great as our grassroots efforts have been, it's clear we need to apply even more pressure to achieve our goals.  First, we must demand that the three redefinition projects, the IOM, the P2P and the CDC Multisite Study, are stopped immediately. Their possible achievements are dubious at best and a waste of taxpayers’ money.  Secondly, we must demand that the Canadian Consensus Criteria (CCC) be adopted as the official definition of ME. Research using various definitions and cohorts renders the results uncertain. It’s imperative that a single clear definition, which includes the hallmark symptom of post exertional relapse, is used for diagnosis and research.

We're talking about turning up the heat 1000 degrees and blowing the lid off this thing. We’re talking about an all-out campaign which will make both the US public and our policy makers in Washington sit up and take notice. We're talking about demonstrations and having our spokespeople in the national media.

How can we possibly pull off such a thing?  Because all of us are incapacitated to some degree, this type of national campaign has never been done before.  The obvious answer, therefore, is to hire an innovative public relations firm to handle most of the work for us! 

As a community, we have raised $20,000 for the documentary, "The Forgotten Plague", and a whopping $213,000 for, "Canary In A Coalmine".  So we know that for the right project, big money can be raised.  We are asking for $26,400 which will finance a 6 month public relations campaign. The amount is not small, but we feel it's quite doable.  Are you fired up?  Are you ready to get this done once and for all?!  We think you are!

Are you fired up?  Ready to get this done once and for all?!  We think you are!

The Proposal

Here is the proposal from our intended PR firm, Crowds On Demand:

With a strong Public Relations campaign, the fight to stop the unjustified redefinition of ME is an issue that we believe will resonate well with the American public.

Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high profile policy maker. To be blunt, most Americans don’t know the reality of ME!

Hiring the innovative PR firm, Crowds on Demand, provides the opportunity to bring concerns about the NIH/CDC redefinitions to the public and get the issue the attention it deserves. The firm is known for an "outside the box" approach that has successfully assisted people and organizations in getting on the map. Unlike many firms, we do more than contact media outlets, we coordinate campaigns from the ground up involving lobbying, demonstrations and media relations.

Crowds on Demand will contact media, arrange for interviews on high profile shows (particularly morning shows), organize demonstrations and recruit policy makers to join the fight. Moreover, we will assist in the fundraising process by helping to make strategic partnerships with influential organizations and donors.

We have agreed to work for a heavily discounted rate of $4400 per month including all of these services because we believe in the cause (normally we would charge approximately $10,000 per month for such a campaign). Furthermore, we promise results within 6 months and promise a 50 percent refund if the organization is not satisfied.

A PR campaign with Crowds on Demand will get the cause on the radar and help the organization raise substantial funds from a donor network. We have excelled in the past working to bring attention to non-profits. For example, Crowds on Demand has worked with a relatively unknown charity in Los Angeles that worked on homeless mental health issues. It was originally unable to fundraise much or get attention. Through its campaign with us, they substantially increased fundraising and got attention in the media.

We want to bring our success to fighting the HHS’s ludicrous redefinition campaigns and getting the CCC universally adopted.

Adam R. Swart

Email: adam@swart.org

Cell:  650-353-0083

Click HERE to read the Full Proposal

---

About ME Advocacy.org

ME Advocacy.org is a project of May12.org. As May12.org is a 501(c)(3) not-for-profit corporation, all donations are tax deductible.

Both sites are run by patient volunteers, with none of the waste on salaries, buildings, and overhead associated with the large patient organizations. We are not affiliated with any government agency, and operate independently to enhance and support the campaigns already put in place by our patient advocates.

For your convenience, donations can be spread over 6 monthly payments. If 440 people donated $10 per month for 6 months we would reach our goal. We feel this is an affordable amount for many people.

To spread your donation over several payments, select the full amount you wish to donate, and then select the number of payments to make on this amount.

Please donate today!

Microbe Discovery Project Launches Crowdfunding for ME/CFS Microbiome Study

 (The following message comes from the Microbe Discovery Project. To find out more, go HERE.)
 ____________________

"I think that the microbiome is going to be where the action is [in ME/CFS] ... I am really eager to pursue that work." ~Dr. W. Ian Lipkin

WE CAN DO IT!

In the past year our ME/CFS community has shown that it can rapidly raise hundreds of thousands of dollars for specific projects. After patients and supporters in Norway – with a population sixty times smaller than that of the US – raised $430,000 in 90 days for a clinical trial of Rituximab, a slew of US campaigns began crowdfunding and reached or exceeded their targets at astonishing speeds: $213,000 in 31 days for the documentary film Canary in a Coal Mine; $18,000 in 35 days for the documentary The Blue Ribbon; and $150,000 in 75 days for an Open Medicine Foundation study of Vitamin B12.

So, we can do this and we can do it quickly. Please donate now, from any country, so we can all benefit from the results of the study; Dr. Lipkin’s prestige is such that his findings will have international impact and help all of us. Tell your friends, your family and your local community to donate and spread the word.

Together, we can do this!

[Watch Dr. Lipkin describe this project here: https://www.youtube.com/watch?v=z_v3bfbBupA]

ME/CFS: a devastating neuro-immune disease as disabling as multiple sclerosis, affecting one million Americans and 17 million people worldwide.

The study: a cutting-edge hunt for the causes of ME/CFS in the gut “microbiome” – the bacteria, viruses and fungi in the digestive system – led by “the world’s most celebrated virus hunter”, Dr W. Ian Lipkin at the world’s largest and most advanced center for microbe discovery and diagnosis at Columbia University in New York.

The payoff: a world-class study with the potential to swiftly lead to treatments using drugs, probiotics or exclusion diets.

Our challenge: to raise $1.27 million (£760,000; €910,000) to fund the project and do it fast! The scientists are ready to go and can complete and publish the study within 12 months. The sooner we fund it, the sooner it starts.

Donate HERE.

Voting Time! Your vote can help the National ME/FM Action Network win $100,000!

Your help ensured the National ME/FM Action Network of Canada made it through to the Semi-Finals. Now we need everyone to vote again and see them through to the Finals and a chance at that all important $100,000, to be used to help raise awareness on 12th May 2014!  Vote online, each and every day from 2nd - 11th December 2013!

Voting is easy!

You do not need to be resident in Canada to vote, but your vote can help to ensure that one of the more proactive organizations in the world is better able to raise effective awareness of our disease beginning on international awareness day 2014. Please join with thousands of others from around the world and help raise awareness of your disease!

If you have voted before, just click HERE. Then vote!

If you have not voted before, don't worry, signing up is simple.

1. Go HERE and click on REGISTER in the top right corner.
2. Enter your email address and a password. Or you can register using your Facebook account.
3. A message will pop up that an email has been sent to confirm your registration. Go to your email inbox, open the email and click the link provided to confirm your registration.
4. Now click HERE. Then click on the VOTE button and you are done for the day.

You can vote every day until December 11th.

To date the May 12th Fundraising Group has won over $10,000 for the National ME/FM Action Network of Canada and worldwide over $650,000 for charities. All has been made possible just by having the support of people like you to vote for our nominated causes in competitions like this one. Your votes can help make such a difference - so please vote every day.

Please consider sharing this article to your own Facebook page and help bring greater awareness to the competition: 

Thank you all for your continued support.

The National ME/FM Action Network of Canada

The Action Network's contest statement is below:

“Our dream begins with awareness. May 12th Awareness Day is a chance for the 750,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard! These illnesses are real; the people are real; and they need help NOW!

ME/CFS and FM are chronic and severely disabling illnesses. They are as disabling as MS and are more prevalent in Canada than breast cancer, MS and AIDS combined! People are frequently bedridden and become isolated from friends and family – invisible in their own communities.

Dr Nancy Klimas, an expert in both ME/CFS and AIDS, was quoted as saying “A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS. If I had to choose between the two illnesses I would rather have H.I.V.”

These illnesses do not discriminate. All races, men and women, rich and poor, adults and children can be afflicted. It is devastating when a child is forced to cope with such a disabling illness.

We are on a mission to bring awareness in Canada for this community of people living with these illnesses and to set the stage for fundraising for research and more physician education. To date our volunteer efforts have been handcuffed as not only is our community very disabled, many are in financial distress. The illness limits our ability to raise the substantial amounts required to mount a large scale awareness event and to fund the desperately needed research. It is the dream of our community to erase stigma and finally be taken seriously by friends, family, researchers, government and those in our local communities.

This contest gives us a chance to fund a nation wide awareness campaign for 2014, the 22nd Anniversary of May 12th Awareness Day. It will also define Canada as a world leader in raising awareness as this day is also an international event. It will not only benefit 750,000 Canadians, but it will indirectly benefit the 20 million people that suffer worldwide.

We will use the funds to hold events in as many communities across Canada as possible which will lay the foundation for a strong network of organizations in Canada and future fund raising for education and research. We’ll connect with every MP and provincial/territorial representative in Canada and have May 12th proclaimed in cities nationwide. We’ll sport t-shirts, carry signs and have engaging speakers in as many communities as possible.

Each event will have its own venue but will share elements common to all. In order to unite the larger community across Canada we’ll also advertise in national and local papers, and, if funding permits, on TV and radio. As education is so critical, we will also target physicians, medical students and other health professionals with our letters and/or advertising. Brochures and a white board medicine video are planned.

We believe with awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists. A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

Aviva’s gift will help to unite our national and local communities and make a difference to the lives of many Canadians. It will give us credibility in our quest for treatment and a cure and hope for a better tomorrow.”

To quote Helen Keller – “Alone we can do so little; together we can do so much.”

Vote for May 12th Awareness - Help Them Win $100,000 for ME/CFS

Source: Phoenix Rising, October 2, 2013, by Firestormm

It will cost you nothing more than an online vote to help see the National ME/FM Action Network enter the second round of the Aviva community competition to win $100,000. Voting in this round closes 14th October and you can vote every single day until then – so please join us and cast your vote now!

National ME FM Action Network - Aviva 2013

Join us in sending the National ME/FM Action Network of Canada through to the second round of the Aviva Community Fund competition so that they can win $100,000 to be used to help raise awareness on 12th May 2014.

This is the first of three qualifying rounds of the online competition. At the time of writing we have 12 days left until all the votes are totted up and the National ME/FM Action Network will move hopefully a little closer to winning $100,000.

Instructions:

Go here to register.

Click the button, Vote Now.

Complete the simple voting registration form (the one on the left) with your email address and provide a password.

Or, you can vote via your Facebook account (the blue button above), and simply skip the permission request to access your profile etc.

You only need to register the first time and you don’t need a Facebook account to vote in this competition.

You can vote every single day (using the same link will redirect you to the right place – or click the pictures above and below which are also linked to the voting page) and you can ask to be reminded to vote automatically.

Voting for the first round ends on 14th October at which time we’ll aim to publish another article when they are successfully through to the next round.

But your support is needed. So please help give a fighting chance for the National ME/FM Action Network of Canada to win $100,000 so that they can ensure May 12th 2014 begins a spectacular year for raising awareness of our disease and bringing much needed attention to those like us who are most affected by it.

The Action Network has already made it into the top ten in its size category of this round and if it maintains that position and is then able to repeat its performance in subsequent qualifying rounds, it will go through to the semi-finals in December. All finalists in each round win $5,000. The leaderboard can be found here.

Please consider sharing this article on your own Facebook page to help bring greater awareness to the competition. Use our share link (the green pop-out located on our Home page version of this article), to ‘like’ on Facebook, to ‘tweet’ or to recommend the article on other applications.

The National ME/FM Action Network of Canada

The Action Network’s contest statement is as follows:

“Our dream begins with awareness. May 12th Awareness Day is a chance for the 750,000 people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard! These illnesses are real; the people are real; and they need help NOW!   

ME/CFS and FM are chronic and severely disabling illnesses. They are as disabling as MS and are more prevalent in Canada than breast cancer, MS and AIDS combined! People are frequently bedridden and become isolated from friends and family – invisible in their own communities.   

Dr Nancy Klimas, an expert in both ME/CFS and AIDS, was quoted as saying “A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS. If I had to choose between the two illnesses I would rather have H.I.V.”

These illnesses do not discriminate. All races, men and women, rich and poor, adults and children can be afflicted. It is devastating when a child is forced to cope with such a disabling illness.

We are on a mission to bring awareness in Canada for this community of people living with these illnesses and to set the stage for fundraising for research and more physician education.   To date our volunteer efforts have been handcuffed as not only is our community very disabled, many are in financial distress. The illness limits our ability to raise the substantial amounts required to mount a large scale awareness event and to fund the desperately needed research. It is the dream of our community to erase stigma and finally be taken seriously by friends, family, researchers, government and those in our local communities.

This contest gives us a chance to fund a nation wide awareness campaign for 2014, the 22nd Anniversary of May 12th Awareness Day.  It will also define Canada as a world leader in raising awareness as this day is also an international event. It will not only benefit 750,000 Canadians, but it will indirectly benefit the 20 million people that suffer worldwide.

We will use the funds to hold events in as many communities across Canada as possible which will lay the foundation for a strong network of organizations in Canada and future fund raising for education and research.  We’ll connect with every MP and provincial/territorial representative in Canada and have May 12th proclaimed in cities nationwide. We’ll sport t-shirts, carry signs and have engaging speakers in as many communities as possible. Each event will have its own venue but will share elements common to all. In order to unite the larger community across Canada we’ll also advertise in national and local papers, and, if funding permits, on TV and radio. As education is so critical, we will also target physicians, medical students and other health professionals with our letters and/or advertising.  Brochures and a white board medicine video are planned.

We believe with awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists.  A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

Aviva’s gift will help to unite our national and local communities and make a difference to the lives of many Canadians. It will give us credibility in our quest for treatment and a cure and hope for a better tomorrow.”

To quote Helen Keller – “Alone we can do so little; together we can do so much.”

What Would You Do With A Million Dollars?

"If there is any disease cohort that needs this kind of jumpstart funding, it is the ME/CFS community," Jennie Spotila.

Eleven ME/CFS organizations, including A Race to Solve CFS, CFIDS Self Help, CFIDS Association of America, CFS Knowledge Center, Fibromyalgia-ME/CFS Support Center, Inc., Health Rising, Massachusetts CFIDS/ME & FM Association, OFFER, PatientsLikeMe, Rocky Mountain CFS/ ME & FM Association and Speak Up About ME are competing for $12 million that will fund up to 18 Patient-Powered Research Networks. These 18 Patient-Powered Research Networks will serve as the basic building blocks for a National Patient-Centered Clinical Research Network. This is a tremendous opportunity for the ME/CFS and Fibromyalgia community!

The National Patient-Centered Clinical Research Network will improve our nation’s capacity to conduct research effectively and efficiently. Having ME/CFS and Fibromyalgia in this National framework ‘mainstreams’ research on our disease and will attract the best and brightest investigators. This will give us ample opportunity to not only participate in ME/CFS and Fibromyalgia research but also to enter into the conversation about the types of research that should be done.

Part of the application requires that we describe some basic aspects of our community. If you live in the U.S. and you are a CFS, ME, or Fibromyalgia patient, please take a moment to answer the 5 questions of this survey. We need this information by the end of August, so please take a moment to click through to this survey right now. Answering the 5 questions will take less than one minute. Every U.S. patient can participate in the Research Network; you do not have to be a member of any organization to participate. If you have already answered the survey, thank you. You do not need to do so again.

This survey closes on August 31, 2013. So act now!

https://www.surveymonkey.com/s/D9NNR8D?utm_source=PCORI+survey&utm_campaign=Dallas+Catalyst+Cafe&utm_medium=email

A million dollars could go a very long way in our community! Let's all pull together to make this happen!

Thank you!

Machiniacs Drive Can-Do Kangaroo to Mongolia for ME/CFS

Only the Aussies!

Fearless Trio Wearing Beard Beanies Tackles Mongol Rally for Charity

Press Release: Los Angeles, CA, August 04, 2013 --(PR.com)-- Beard Head, Inc. is thrilled to announce that it is sponsoring the Machiniacs team at this year’s 2013 Mongol Rally, a pan-continental 10,000 mile roadtrip for charity. The team will wear Beard Head beanies throughout the 12-week journey from the United Kingdom to Mongolia and back.

“Our team was immediately struck by Beard Head’s wonderful mix of playfulness and practicality,” team VP Loren Adams said. “The Mongol Rally is a conquest - so it seems appropriate to warm our faces with Barbarian-esque Beard Head beanies.”

The team has pledged to raise money for Cool Earth and for ME/CFS Australia, an organization dedicated to beating Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). ME/CFS is a severe, acquired illness related to the dysfunction of the brain, gastrointestinal, immune, endocrine, and cardiac systems.

“We’re excited to help support a journey that is inspiring in so many ways,” said David Stankunas, President of Beard Head, Inc. “The Mongol Rally embodies the sense of adventure and bravery that Beard Head is all about.”

Loren Adams was diagnosed with ME/CFS two years ago. Her diagnosis and recovery motivated her to embark on the challenging Mongol Rally voyage.

“We hope that completion of such an ambitious journey will stand as a reassuring message for people currently suffering from this debilitating illness,” Ms. Adams said.

The team is driving the “Can-Do Kangaroo,” a 2003 Renault Kangaroo covered with Beard Head-inspired artwork. Live coverage of their trek can be found at: machiniacs.org and theadventurists.com.

The Mongol Rally has raised over five million dollars for charity since its inception in 2003. The event is largest run by the UK-based group The League of Adventurists International.

Beard Head, Inc. is the maker of the original beard beanie. For more info, visit Beardhead.

UK ME/CFS Biobank project awarded £1 million grant

Press Release: LSHTM Communications Team, June 28, 2013

A pioneering biobank project aimed at the study of Myalgic Encephalomyelitis (ME) / chronic fatigue syndrome (CFS) has been awarded a grant totalling £1,029,411 ($1,588,225) over three years by the US National Institutes of Health (NIH).

A biobank is a large collection of biological samples including tissues such as blood, which provides a valuable database for scientific research. Patients with an illness, as well as healthy people (controls), volunteer their tissues for inclusion, and each sample can be linked with detailed clinical information about the donor.

The UK ME/CFS Biobank was launched in 2011. It is the only one in the UK and the first in Europe aimed at the study of the illness. The project is led by the London School of Hygiene & Tropical Medicine and is currently funded by the ME Association, Action for ME, ME Research UK and a private donor.

Samples for the ME/CFS Biobank are obtained via NHS primary care networks and other sources, and are then processed and securely stored at the University College London/Royal Free Hospital Biobank.

During phase one of the project, researchers successfully banked samples from over 100 clinically assessed ME/CFS patients and controls, along with key clinical information about the donors, which has been anonymised to maintain patient confidentiality.

The grant from the NIH will enable important research on the immunology and genetics of ME/CFS, which may lead to the discovery of much needed disease biomarkers. It will also help to expand the Biobank to store samples from over 500 participants, including almost 300 patients and over 200 controls (comprising healthy controls and people with multiple sclerosis), which will be made available to medical researchers internationally.

Dr Eliana Lacerda from the London School of Hygiene & Tropical Medicine, one of the lead researchers on the project, said: “At least one in every 500 adults in the UK is affected by ME/CFS at any one time, as well as a smaller but significant proportion of children. The NIH grant provides a huge boost to the Biobank, which will enable more research into the causes of ME/CFS and ultimately help those affected.”

Erinna Bowman, one of the project researchers, said: “A key component of our project is its longitudinal design, which includes participant follow-ups over an extended period of time. This longitudinal aspect makes the Biobank an even more valuable resource and presents new opportunities for scientific discovery in the years to come.”

The London School of Hygiene & Tropical Medicine is home to a dedicated research group working on research into ME/CFS.

 

Please Help Invest in ME win $5,500! Voting Ends April 30th!

Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (ME) (Between 150,000 and 250,000 people in the UK have ME.) This is a fairly new charity, but they have a big vision: to implement a national strategy in the UK to advance biomedical research into the causes, pathology and epidemiology of ME, eventually leading to biomarkers, medical treatments, and a cure.

To further that goal, Invest in ME hosts an annual international conference featuring clinicians and researchers from all over the world, as well as international patient advocacy groups and journalists. This year’s conference will be held on May 31 in London and includes Sonya Marshall-Gradisnik of Bond University; Prof. Olav Mella and Dr Oystein Fluge of the Norwegian Rituximab study; Dr Andreas Kogelnik of the Open Medicine Institute and Dr Mady Hornig. 

Invest in ME is also raising funds to establish a UK and European Centre of Excellence for translational biomedical ME research. The center would not only focus on research, but would include a strong clinical component, diagnosing and treating for patients, as well as training healthcare providers. Invest in ME has already raised $244,400 of the $255,000 they will need to start their first research project.

Please vote now to help raise funds for this worthy charity. Voting ends on April 30th. 

You can only vote once! Go HERE to vote.  

Click HERE and then click "rank" to see how Invest in ME is doing.

Update: Many thanks to everyone who voted! Invest in ME won $2,000 pounds!

The National ME/FM Action Network needs your vote!

This is it! Today is the last day to vote for The National ME/FM Action Network! This worthy charity is still 1000 votes short of making it into third place. Third place will get them $5000. Fourth place gets them nothing. We need more  votes!!

If every person reading this post votes on the link below, and then passes the link on to just one other person, we can get 1000 votes in one day!

Vote here: http://www.sharethebounty.ca/charities.php

Instructions: Scroll over to the "N" on the alphabet bar and click. Then click on National ME/FM Action Network. (You'll have to give them your email address. Don't worry - you won't get ads unless you click on the box to receive them.)

Here's what The National ME/FM Action Network does (from their website):

The NATIONAL ME/FM ACTION NETWORK became a Canadian charitable organization on June 18, 1993 dedicated to Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) through support, advocacy, education and research. Since its founding, the organization has been an ACTION Network. Some of our accomplishments are:

• Providing knowledge and empowerment to the people who need information and help
• Establishing relationships with both the provincial and Canadian governments in Canada to better the lives of people ill with ME/CFS and FM
• Developing contacts with medical and legal professionals
• Working with National and International Support Groups
• Publishing a quarterly newsletter keeping people informed about the progress in research and related matters
• Spearheading the development of the Consensus Documents, known as the Canadian Definitions
• Resource guides for disability matters
• TEACH-ME guide for Teachers and Parents of children and youth with ME/CFS and FM

The NATIONAL ME/FM ACTION NETWORK hosted the 10th International IACFS/ME research and clinical conference for ME/CFS and FM and related illnesses in Ottawa from September 22nd to 25th, 2011 consisting of professional workshops and meetings as well as a one-day meeting for the general public.

Our Motto: People Helping People Helping Themselves