End ME/CFS Project Update and more...

[Gingergrrl]

https://bos.etapestry.com/prod/view....16693328&key=415185ea244ea2b2bedeb0449b92682

I am posting the link to the latest newsletter from the End ME/CFS Project. For some reason, the link opens very slowly on my computer, but if I wait a few minutes, it opens and then it works fully. Please let me know if this link does not work and I will try to post it another way.

In the newsletter are several great updates and stories including:

- OMF is raising funds for a new study of the severely ill ME/CFS population who are homebound and bed-bound. This is extremely hopeful to me as this study believes that the biological abnormality that causes the disease would most likely be the strongest in those who are the sickest. The testing for this study will be so comprehensive that it will cost $65,000 per patient. The newsletter explains how you can donate to this study and other projects.

- Updates on the scientific and advisory board

- Updates and links to interview with Laura Hillenbrand

- Information on how to donate to OMF using Amazon Smile and i-Give

- Info on the KnoW M.E. Challenge started by Tom Jarrett and his family

- An update from NIDA and Linda Tannenbaum

- Other fundraising events, projects and ideas

- A survey for ME/CFS Patients re: establishing Centers of Excellence in different cities and states in the U.S. (to assess what is out there and what is needed.) I took the survey and it only takes a few minutes to complete.

You can also sign up to receive this newsletter in your e-mail. I am so proud of the work they are doing and I wish I was able to do more to help them.

 

[Gingergrrl]

@Sasha or @Bob Can you of you guys tell me if the link works when you click on it? I know it is slow to load, but does it eventually work?

 

[Bob]

@Sasha or @Bob Can you of you guys tell me if the link works when you click on it? I know it is slow to load, but does it eventually work?

It works exactly the same for me, Gingergrrl... It always sits there doing nothing for about 20secs, and then it suddenly (and reliably) loads all at once.

 

[Gingergrrl]

@Bob Great, and thank you for confirming! I'm not sure why it is slow to load but as long as it works, it is okay!

 

[Bob]

An extract...

The first OMF Scientific Advisory Board meeting in October concluded with a clear direction toward ending ME/CFS. Whatever biological abnormality causes the disease would most likely be stronger in those who are the sickest.

This first study will enroll 15-20 severely ill ME/CFS patients (largely bed/home bound). We will check many areas: genetics, genomics, pathogens, proteomics, immunology, gastrointestinal, metabolic/endocrine and brain/cognitive function. We are looking for the biological abnormalities that would explain the symptoms and debilitation. A recent Medscape article ( “Chronic Fatigue Syndrome: Wrong Name, Real Disease”) highlighted this study.

At this point, we need the funding to launch this study. Because the testing is so comprehensive, the study is expected to cost approximately $1 million (about $65,000 per patient). If you would like to donate toward this study and the End ME/CFS Project, you may do so at our website.

Website: http://www.openmedicinefoundation.org/
Donate NOW: http://www.openmedicinefoundation.org/ways-of-giving/donate/

 

[SOC]

Well it's about freakin' time! We've been putting up with research done only on mild patients, research that is not as conclusive as we would like. We've needed the research on the housebound and bedbound -- those most likely to have the clearest abnormalities -- for decades. This is long overdue.

I know it's hard to do research with patients that can't easily come into the office for labs, etc, but does it make sense to waste millions (okay, thousands) of research dollars on studies that are likely to be inconclusive because the study group might not have the clearest markers?

 

[NK17]

Thanks @Gingergrrl for posting OMF's latest newsletter.

I absolutely agree with the researchers and @SOC that studies on the most severe of us are a must. We need to go at ground zero to test, collect, analize and interpret. PWME can't wait any longer to find some answers.

I've also done the survey, it doesn't take more than a few minutes, brain fog permitting, and I think that as with other Dr. Jason's group surveys, will help shed a light on our desperate need for CoE and other urgent needs.

I'll go back and read more, as I hope that many more of us will do and I will definetely donate to the worthy cause to fund true biomedical research into the causes and possible treatments for ME.

 

[Sasha]

@Sasha or @Bob Can you of you guys tell me if the link works when you click on it? I know it is slow to load, but does it eventually work?

Must admit it sat there for so long that I gave up on it (I'd already received the newsletter direct). I think that's unfortunate because a lot of people will give up.

Good job Bob put that quote up!

Well worth donating to, I'd say.

 

[Gingergrrl]

Must admit it sat there for so long that I gave up on it (I'd already received the newsletter direct). I think that's unfortunate because a lot of people will give up.

Good job Bob put that quote up!

Well worth donating to, I'd say.

@Sasha Since you have the newsletter too, do you think if you re-posted the link it might open faster than the one that I have? Mine just opens slowly no matter what, but then once open it works perfectly. I wouldn't want anyone to miss the info or survey!

 

[Sasha]

@Sasha Since you have the newsletter too, do you think if you re-posted the link it might open faster than the one that I have? Mine just opens slowly no matter what, but then once open it works perfectly. I wouldn't want anyone to miss the info or survey!

I don't think it's likely since it's exactly the same url. The problem is at their end, not ours, I'm afraid!

 

[Bob]

The webpage takes a reliable half a minute to open for me. Never any longer.

 

[Gingergrrl]

I am just bumping this back up to the top in case anyone missed it.