What CFS cause(s) should I donate to?

[Patrick*]

Hi. As I mentioned in another thread, I'm new here.

If this has been discussed previously, sorry, I couldn't find it. I'm looking for a good CFS cause to donate to (besides PR, to which I've already decided to donate). Who is doing the most promising research? I prefer an established institute with a proven track record, but will keep an open mind.

I appreciate all suggestions.

Thank you

 

[Sushi]

I'm looking for a good CFS cause to donate to (besides PR, to which I've already decided to donate). Who is doing the most promising research? I prefer an established institute with a proven track record, but will keep an open mind.

Thank you

That's a really tough question and you are likely to get suggestions all over the map. The first thing that comes to mind is that there really isn't an established institution with a proven track record as no one has yet figured out for sure causes or effective treatments. At best, some treatments help a percentage of patients.

On the other hand there have been about 5 new private or university research treatment centers that have been founded in the last year with mostly private money, and most of us are hoping that some collaboration amongst all their resources will come up with something promising.

Until then, we are all following the leads we have, the treatment options that seem most promising for us as individuals...or watching and waiting (maybe this would be the majority).

The question of where to donate is a bit rocky now as some are feeling burned by donating to places that appeared promising and then, well...didn't seem so promising (to be kind ). Any promising institutes or research groups will be written up here. We are also entering charitable give-away sites and in this way have raised many thousands that have gone to research.

Best wishes with this endeavor. I think most of us realize that the money that will lead to treatment and, dare I say, a cure, is likely to come from us and/or those who are touched closely by this disease and happen to have bags of money.

Sushi

 

[floydguy]

I would consider in no particular order:

- Dr. Klimas (Immunology/Ampligen, Nova Southeastern Univ., FL)
- Dr. Enlander (GCMAF, Ampligen, Mt. Sinai, NYC)
- Dr. Montoya (Infections, Stanford, CA)

If anything, it's geographically diverse . I think an important component is who is focusing on areas that you think have the most potential to you. BTW, I've drastically oversimplified what each of the above is focusing on.

 

[Nielk]

#1




Reposting Beaker's post:



Mount Sinai ME/CFS Center -- How to help



I have been trying to find out information on how to support the new ME/CFS center at Mt Sinai. I have heard nothing but wonderful things about Dr. Enlander ( from patients and other ME/CFS docs) . It looks like this center has hired some top notch researchers and doctors. I am hopeful that good things will happen there that will benefit us all. I thought others might also like to have this information.

It has been a bit of a go around to get the info. ( Thanks to a friend who is a patient of Dr. E who finally got the full info pinned down and to Madietodd for her help and also , of course, Dr E and staff)


There are 2 foundations, both tax- exempt charities.


1.
Mount Sinai ME/CFS Center
Mount Sinai School of Medicine
c/o Derek Enlander MD
860 Fifth Avenue
New York NY 10065

Who to make check out to:
Mount Sinai ME/CFS Center

What is this foundation supporting? (ie specifically where the money is going and how it will be used )

ME/CFS research especially treatment of Chronic Fatigue Syndrome





2. Caron and Derek Enlander Foundation

Contact information :

Derek Enlander MD
860 Fifth Avenue
New York NY 10065

Who to make check out to:
Derek Enlander MD w/notation Caron and Derek Enlander Foundation

What is this foundation supporting? (ie specifically where the money is going and how it will be used )

Medical Research in these specific areas:
Cancer research
ME/CFS research especially treatment of Chronic Fatigue Syndrome
Fibromyalgia cause and treatment
Lymes Disease

 

[Patrick*]

Thanks for the responses so far. Mont Sinai sounds promising.

Sushi, where can I learn more about these "5 new private or university research treatment centers"?

 

[Sushi]

Thanks for the responses so far. Mont Sinai sound promising.

Sushi, where can I learn more about these "5 new private or university research treatment centers"?

I'll need some help here! I pulled 5 out of the air. One is Mt Sinai, one is Nancy Klimas's new center (can't think of the university in Ft.Lauderdale), one is Dr. Peterson's Simmaron Research (in some way associated with Bond Univ in Australia,) one has 3 letters in the name and just received $10,000,000, and there may be another group working together that I can't think of. Oh, Drs. Cheney and Ruggiero have been working together on MAF 314 mini-trials, though this isn't an institute. There is also WPI.

I hope others can fill you in. There are threads on all these groups.

Best,
Sushi

 

[eric_s]

The one with 3 letters is the Chronic Fatigue Initiative, but as far as i know, they're not really an institute themselves. They fund studies done at other places. And there was no way to donate mentioned on their website when i last checked. But they might be open to it, if you ask them directly...

And Nancy Klimas now works at Nova South Uni, i think that was the name...

 

[Frank]

http://www.simmaronresearch.org/

 

[Hope123]

This is a great time of the year to donate and encourage supportive family and friends to donate particularly for tax deductions in the US. As far as I know, Chronic Fatigue Initiative (CFI) is a private family foundation and not accepting funds from outside.

There are many places to donate, some of which I list below.

Stanford University I like because they have a team of researchers assembled already and have a bunch of statisticians, epidemiologists, and other resources at their fingers at a major university:

http://chronicfatigue.stanford.edu/about/donation.html

Nancy Klimas I like because she has a 2-decades+ record of researching CFS:
http://www.cfsclinic.com/Makeagift.html

Staci Stevens' Pacific Fatigue Laboratories studies post-exertional malaise:
http://www.pacific.edu/Academics/Sc...About/Pacific-Fatigue-Lab/About/PFL-Team.html
http://aboutmecfs.org.violet.arvixe.com/News/PRJan09Pacific.aspx

Dr. Lucinda Bateman and company do good work in Utah with the University of Utah:
http://www.offerutah.org/donations.htm

IACFS/ME doesn't do research but is an international scientific group which publishes a regular scientific journal about ME/CFS and holds a conference every 2 years for scientists to share and discuss ideas:
http://www.iacfsme.org/Home/IACFSMEDonation/tabid/345/Default.aspx

For the UK, I like MERUK (ME Research UK) in particular for their research projects and ideas:
http://www.meresearch.org.uk/donation/index.html

 

[justinreilly]

PWCalvin,

I like Dr. Enlander's Mt. Sinai ME/CFS Center. (also think Dr. Montoya at Stanford is good and have heard good things about Invest in ME in the UK)

I definitely do not recommend CFIDS Association of America.

Less objectionable, but places I have some reservations about are Dr. Klimas (she recommends GET and often called ME "chronic fatigue"), CFI (as they use "chronic fatigue) and Dr. Bateman's OFFER (another 'fatigue' org).

Those are all research orgs. For advocacy, ME Human Rights Coalition looks promising, but I don't know if they have their non-profit status approved yet.

 

[Ember]

For advocacy, ME Human Rights Coalition looks promising, but I don't know if they have their non-profit status approved yet.

Who are they, Justin? Do they have a website?

 

[gregf]

Please do not donate to anyone who calls our illness Chronic Fatigue, or CFS.
Request that as a minimum, they call it ME/CFS, or preferably ME.
We need to work together on this.

 

[Hope123]

This is my personal opinion of course but I don't judge organizations by their name but by their researchers and their research.

If you object to OFFER and Dr. Bateman's work, that's fine but realize they are only one of 4 groups in the world I know of studying PEM (post-exertional malaise) specifically and the biological basis for it.

Name changes take time and I believe a major reason why many scientists and clinicians, even those with a neutral stance towards ME/CFS, do not accept the name currently is because they have not been convinced that "myalgic encephalomyelitis" describes the illness accurately or that the name has an established biological basis yet. Supporting organizations which are studying the illness accurately even if they don't have the exact name right is important in my view in pushing correct diagnosis and naming. As a sick person, I can understand how and why people feel the way they do but as a scientist, I can also see why the name change hasn't occurred as much or as quickly as people would like.

As for identifying which orgs are doing good work vs. not outside of the name, I realize people may not have the background, health, time, or interest in pursuing that but this site does provide guidance and opinions. If you have the interest, check out the Research sub-forum. When you find a research article that clicks with you, find out who funded the research or where the researcher comes from; then see if you can donate to that institution or researcher. This is one way I find out who I feel is doing good work.

 

[Ember]

Name changes take time and I believe a major reason why many scientists and clinicians, even those with a neutral stance towards ME/CFS, do not accept the name currently is because they have not been convinced that "myalgic encephalomyelitis" describes the illness accurately or that the name has an established biological basis yet. Supporting organizations which are studying the illness accurately even if they don't have the exact name right is important in my view in pushing correct diagnosis and naming.

Does the name a researcher uses signify the cohort being studied? Both Dr. Bateman and Dr. Klimas were members of the panel of experts for the ME-ICC. Presumably both were convinced that ME describes the illness accurately and that the name has an established biological basis.

 

[Valentijn]

Does the name a researcher uses signify the cohort being studied? Both Dr. Bateman and Dr. Klimas were members of the panel of experts for the ME-ICC. Presumably both were convinced that ME describes the illness accurately and that the name has an established biological basis.

I agree. I think the definition of ME/CFS used by a charity or research institute is a lot more relevant than its name. Refusing to donate to any ME/CFS organization using "CFS" in their name would preclude donations to almost all organizations in the US.

 

[Nielk]

I agree. I think the definition of ME/CFS used by a charity or research institute is a lot more relevant than its name. Refusing to donate to any ME/CFS organization using "CFS" in their name would preclude donations to almost all organizations in the US.

I agree, right now at this juncture, the most vital information is the criteria that the studies are using of who they include (or exclude) for the studies.
To me, if they are using the new ICC criteria or even the CCC, I would feel that the study has more value to me.
Studies that are done, without clarifying the cohorts the are using, are useless because whatever the outcome, what does it really mean?
I would also look at who is heading these studies and where. Whose backing do they have?
All the ones that Sushi mentioned earlier are noteworthy and important centres. The ideal would be if they would all be in touch with each other and
work in synchrony. Regardless, I am excited about each and every one of the. Never in my 10 years with this disease, did I see so much effort put in with
experts in the field to study different aoects of it and try to come up with some answers for them.
If some people do have money that they want to donate to one (who can afford to give to all?) maybe, it would make sense to give to the one who is geographically closest to where they live.
I live in NY and am a patient of Dr. Enlander's and as some people who know me better here, I'm a big fan of his so I would donate to his centre but, as much as I would want to see the whole world donating to him, there is a need for each one of these centres.

 

[Purple]

In the UK, there is the 'Let's do it for ME' campaign, trying to raise 100,000 to start the first biomedical reseach and treatment centre in the UK, in co-operation with the charity Invest in ME: http://www.letsdoitforme.blogspot.com/

 

[justy]

I second purples request - we desperately need funds for the first bio medical research and treatment centre in the U.K.
Justy.

 

[justinreilly]

Who are they, Justin? Do they have a website?

This is a very nascent org started a couple of months or so ago by Debbie (I think her name is, brain fog), which was organized on mecfsforums.com in the members advocacy section. there is a thread there. I don't think they have a website and don't think they have been granted their tax exempt approval, so maybe best to hold off donating. Patricia Carter/ Wilddaisy and NotAllInMyHead there and her husband (all three lawyers) will be directors.

 

[justinreilly]

Please do not donate to anyone who calls our illness Chronic Fatigue, or CFS.
Request that as a minimum, they call it ME/CFS, or preferably ME.
We need to work together on this.

I agree strongly with this. We have limited funds, so let's maximize them and only give to the very best orgs that help us the most. I think it would be very productive to offer donations to certain groups who are doing some good work, but could do simple things to vastly improve, on the condition that they do those simple things. For example- offer a donation to Bateman's OFFER if they change the 'fatigue' in "OFFER" to ME or neuro-immune, etc.

We could pool funds on a thread or the wiki here or a website to sweeten the pot.

I am going to start this off by offering to donate $500 to Montoya's Stanford lab, but on the condition that it change it's name to something acceptable like the Stanford Neuro-Immune Diseases Initiative (they study more than just ME), etc.

The same amount- another $500- goes for the CFI for a change to MEI.

I am going to also offer to stop criticizing CFIDS Association of America if they change their name to MEAA and use the term ME (not our slave name "CFS")!