• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

"Determining the Disease Burden of ME/CFS" by Mary Dimmock in SMCI's The Chronicle

Messages
2,158
@Rowena Ilagan - Preview please? Just a paragraph or two.

I have a lot of respect for SMCI and subscribe to their newsletters. However, just giving a link to the website and inviting subscription is not really helpful in starting a discussion. It means everyone has to go over to the website, search for and find the article, before they can participate in any discussion here.

I thought I might be helpful and find the article and copy a bit of it or summarise it here, but I used the link you gave which took me to the website, and used the search function to look for Mary Dimmock and then to look for Determining the disease burden. Neither search found the article. I give up.
 
However, just giving a link to the website and inviting subscription is not really helpful in starting a discussion.
Arguably it's spam like behaviour, in my opinion.

Solve Homepage > Newsletters (at bottom of page) > Archive (underneath sign-up form) > Latest version of the Chroncle (PDF version) http://solvecfs.org/wp-content/uploads/2017/03/Chronicle-02-2017-1.pdf

Link to jump straight to article - http://solvecfs.org/wp-content/uploads/2017/03/Chronicle-02-2017-1.pdf#page=15
Determining the Disease Burden of ME/CFS By SMCI Board Member Mary Dimmock

Those touched by ME/CFS have long known what the 2015 Institute of Medicine (IOM) report and other recent publications confirmed: ME/CFS causes more debilitation than diseases such as congestive heart failure, multiple sclerosis, and end-stage renal disease. And yet, in spite of this, the IOM reported “remarkably little research funding” for
ME/CFS. The impact a disease has on patients is called its “disease burden.” The World Health Organization has pioneered a single measure of disease burden, disability-adjusted life years (DALY), which combines the number of years of premature death with the magnitude and number of years of disability caused by a given disease.

Though it may sound cold, this quantifiable measure of pain and suffering allows federal policy makers to compare very
different diseases—for instance, the burden of a disease that primarily causes premature death with that of a disease that causes decades of debilitation. DALY also provides a means to evaluate whether public health responses and policies are decreasing a disease’s burden over time. For instance, likely as a result of new treatments the US burden of AIDS fell by 61% between 1990 and 2010.
 
Messages
2,158
Hi @Rowena Ilagan , I don't doubt your motivation to help SMCI share their news and encourage more ME sufferers to learn about what they are doing. As I said in an earlier post, I respect and appreciate what SMCI are doing.

However, I wonder whether you can see that the way you are going about sharing their news on Phoenix Rising is starting to annoy some of us.

This is not simply a noticeboard for advertising organisations, it is a forum for interaction between ME sufferers, carers and supporters. If you are going to be useful to SMCI, I suggest you spend time learning more about how PR functions, and perhaps participating yourself if you want to.

Starting up lots of new threads which refer to aspects of SMCI work, but then link simply to the website and to the subscription link is not helpful.

Can I suggest that instead, you only start a new thread once a month when the new newsletter comes out, and make your post much more informative about what is in the newsletter. Or even better, start a single thread headed something like 'Latest Solve ME CFS Initiative news', then once a month when the newsletter comes out, or other events arise, you can add a new, informative post to that thread.

Otherwise, I'm afraid all you'll do is put people off.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Suggestion noted. I also communicated with SMCI; perhaps a better way to get their news out would be to create a page here with regular updates on their activities.

that would be much better as many of us have limited energy to spend on posts and I felt like I wasted energy clicking this thread and find there was nothing at all to do with the title here. That's something which will annoy many.