ME/CFS Monster study needs $5 Million – how do we get there?!

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Sure, $5 Million is a very big goal, but this research needs to be done and the Microbe Discovery Project team is sure the patient community’s efforts can help reach it…

Right now – at this very point in time – we are in a unique position to make major headway with ME/CFS research. Dr. Lipkin and Dr. Hornig’s  ‘Microbial Discovery and Immunity in ME/CFS’  study at the Columbia University Center for Infection and Immunity (CII) is breathtaking. A high quality, in-depth study with the best and latest technology, which has never been done before on this many well characterized patients and controls.

The study represents an opportunity which the community has never had before, to solidify findings and generate hypothesis for all researchers from a colossal amount of data. We can move forward significantly, if we up the ante now we have a chance to bear fruit faster, so please do read about the study.

There is a high risk of this research not getting adequately funded or fast enough. As a global community at large we can’t afford to let that happen. How many more years should we wait?

Researchers, that can pull off huge programmes of quality research need very significant RFA’s (Request for Applications) as we have said before. If the NIH (US National Institutes of Health) were to release a $10 Million RFA shortly, for example, other needs are also competing for these RFA funds. Other great researchers and programmes need to be funded too. It is also important to seed new researchers into the field and develop clinical Centre’s of Excellence, among other things.

Often, grants that do get awarded are stretched out over time and shared around specific areas of need, that way the NIH can fund many things. A classic example is how a researcher, when submitting through the RFA process, can be awarded something like 3.5 million or more over 5 years to look at something they would like to study.

So, this means that the process of getting funding to researchers can be slowed down considerably and exponentially.

 

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The Everest is getting enough people to donate

Not everyone can donate, many are broke due to burden of illness and we don’t want people to break the bank, but sharing and vocally supporting among other things can be done to help. Patients donate in the hundreds and we need to them and their loved ones to donate in the thousands. Millions are missing from their lives and research is critical to improving this situation. Our community is growing and we can reach further.

Thousands can and would donate if they really understood how important the need is, the quality of the research, and the difference it could make in the big picture. We need people to voice this and encourage others to invest in research, but in a way that doesn’t make people feel bad if they can’t donate!

We must battle against apathy. If we can get thousands to understand the significance of this research and that this goal can be reached collectively – we will get there. So long as consummate researchers remain unfunded it’s hello to the status quo, research is one of our main tickets to change for people with ME/CFS.

We are  in this together – people’s help and perseverance is key

The community has already invested significantly and past donations have helped pay for collection of patient samples. CII are pulling all the stops for ME/CFS research and working to gain as much NIH funds as they can: we are in this together. The Microbe Discovery Project team (MDP) is very small and sick too: we all have ME/CFS. We need everyone to get behind the effort. Above all, please help, with patience and perseverance – globally we can make the all important difference for vital research.

 

How do we get there? What can people do?

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Please donate. $10 and $20 dollar donations are incredibly important, they contribute hugely and are also and act of advocacy. It would be brilliant if our MDP team could be able to write to the NIH to say that over 10,000 people have donated and support this research! If you can donate more please do.

Smaller donations really do help to encourage large donations, and the NIH. 

If you can’t donate, please share this with others who can.

Talk and share

Help increase the amount of views we get on our website and of the information about the study. There are many places people can talk and share about the study and fundraising for it, even if you can’t donate. Share the project on internet forums, Facebook groups and Twitter, even in groups about SIBO or IBS or other groups that may have people with ME/CFS in them. Celebrate the milestones we reach too and share about those. Why not ask friends or family to donate, or donate for birthdays? Even Christmas isn’t that far away now.

If you notice information hasn’t been shared on a forum or in a group for a while consider making a post. If you were able to donate let people know you have donated and why. Share about the fundraising effort in comments sections of articles about ME/CFS and post links to the site and the study. Write awareness-raising posts or make a video showing your support. This all encourages views and donations.

Journalists, Bloggers, Philanthropic /Charitable Organisations and Advocacy

If you know of a Journalist that may write about the fundraising efforts please contact them and tell them about it. If you have a blog please write the project and your support. If you can contact your US congressional representative about funding being needed for this research, as well as other research – please do! If you want to contact a philanthropic or charitable organisation to see if they may support with some funds – please do! Feel free to use information from the MDP website to help you.

On the ground fundraising

Many diseases/illnesses have fundraising drives that bring in a huge amount of extra money for research this way. Draw in the community if you can. Some people may be able to run fundraising events, or know someone who can help with them. Some people may be keen to sell something they don’t want and donate the proceeds. Things like fun runs, triathlons, tea parties, bake sales, book sales, garage sales, you name it and it becomes an option! Send us more idea’s to add here, especially for patients.

Why not see if your able to get someone to do the The Stair Challenge to help raise awareness and funds.

You can creatively use Facebook events or fundraising sites like JustGiving, crowdrise and gofundme  to do “personal fundraising” for causes to help gain sponsoring for specific activities.

If you think of something you can do, just do it, we need you to!

On social media we will give total updates and also let you know how many views ‘the study’ has been gaining. We will get news and information out on social media and from the website as we can. Remember, the total raised at the top of our website is not a live feed and is updated weekly.

If you willing to share why you have donated but want to remain anonymous, message us on Facebook and Twitter or via email at microbediscovery@gmail.com – please give us time to get back to you. If you do an on the ground fundraising event please let us know about it, we love to share about peoples efforts!

You can donate through Columbia CII’s secure site here. You can also donate by check or wire/bank account transfer, details for this are on the bottom of our homepage here.

If you happen to be someone who is considering making a Major Gift of $10,000 and over, or would like to offer a matching donation please contact Fern Schwartz at CII through this email fs2475@columbia.edu

 

We are already on our way to Camp I…

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