What CFS cause(s) should I donate to?

[Hope123]

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 with your overall point. But to just to clarify, I'm not thinking of Bateman and Klimas, who are both squarely in our corner; I'm thinking of 70%+ US healthcare providers who think ME/CFs is both a psychiatric and medical disorder per the CDC's recent survey. These docs might be more easily swayed than the 14% who think ME/CFS is wholly a psychiatric disorder. I want the majority of docs to understand this is a medical disorder not only the less than 10% of researchers and docs who are already convinced.

 

[gregf]

In the 1980s, the Gay community worked together to have HIV and AIDS recognised and to get funding for research. They had leadership and discipline.

I know a thing or two about politics and publicity and I feel the lack of leadership and discipline in our patient community who sit around tolerating being called chronic fatigue, repeating the derogatory name the CDC gave us, and repeating it to each other, is the biggest problem we have. I recently donated $1600 to helping the cause of calling it ME, but I feel things have got worse since then.Frankly I am really close to giving up and walking away, which is a shame because I now have some money to donate.

Being worried about the science of the name ME is a dead end trap. What matters is getting on the TV and explaining why we are using the original name of ME and expose the criminals who did this to us.

Justin I am prepared to help and match your conditional donations. But I want to know there is some leadership and support for this. No more pissing money in the wind or I walk away.

 

[justinreilly]

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.

ME can stand for Myalgic Encephalomyelopathy or Myalgic Encephlalopathy. It is quite clear that these names are supported by the science.

In any event, not being sure that ME is supported is absolutely no excuse for using 'fatigue' or 'chronic fatigue' in a name. At the very very least, "CFS" or CFIDS, even CAA does this much for christ's sake.

I think scientists often don't realize how much power nomenclature has. The scoundrels picked the name "CFS" and continue to use it because of its power to oppress us. We can't afford to help them and every time someone says "CFS" this is exactly what one does, if only in a small way; but those small ways add up to a huge help to our oppressors.

 

[justinreilly]

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.

So be it, as far as I'm concerned. Maybe this will motivate them to change their names.

I agree that the quality of the science is more important that the nomenclature. It's a given to me and all of us that we should only give to research orgs that do good science. Using ICC and/or CCC is necessary (which CAA does not use in their biobank and does not require it of their grantees). But it is absolutely ridiculous that an ME org would use the term "fatigue" or "chronic fatigue." How much money and effort to change this would it take? peanuts. Plus, if they are negligent and harmful in something so simple and obvious, it makes me ask what else are they doing wrong?

Look, we have extremely limited resources and consequently none of the orgs are going to receive enough money to do all the excellent work they want and need to do. I feel very strongly that we should donate to that/those org(s) that are doing the very best job. This will encourage all of them to do a better job. A bigger bang for the buck, which is essential for us.

Or we can offer to donate to specific orgs if they change the harmful things they are doing. Also, more bang for the buck.

I am not suggesting that other orgs are as bad as CAA, but the reason CAA has been able to get away with all its selfish shenanigans that harm patients for so many years is that we patients have not stood up to them and required that they act in a helpful manner.

 

[justinreilly]

In the 1980s, the Gay community worked together to have HIV and AIDS recognised and to get funding for research. They had leadership and discipline.

I know a thing or two about politics and publicity and I feel the lack of leadership and discipline in our patient community who sit around tolerating being called chronic fatigue, repeating the derogatory name the CDC gave us, and repeating it to each other, is the biggest problem we have. I recently donated $1600 to helping the cause of calling it ME, but I feel things have got worse since then.Frankly I am really close to giving up and walking away, which is a shame because I now have some money to donate.

Being worried about the science of the name ME is a dead end trap. What matters is getting on the TV and explaining why we are using the original name of ME and expose the criminals who did this to us.

Justin I am prepared to help and match your conditional donations. But I want to know there is some leadership and support for this. No more pissing money in the wind or I walk away.

Greg, you should obviously do what you think is best. But I don't think your demand for immediate leadership on this will be granted (I hope i am wrong!). We are patient activists like cats running around doing our own little advocacy things. This is because we are so sick and disabled that it is very difficult to organize and work for advocacy. I have been sick for 10 years and for 8 of those years I was absorbed learning all i could about treatment, the disease and its history; plus trying to stay alive and feed myself. When i went on the internet a couple of years ago and found out how bad our supposed patient org CAA has been, I was shocked. i had assumed they were doing what little they could to help us.

Now we patients are trying to make some headway in advocacy and organize, but again, it's painfully slow because we are so disabled, so good leadership is probably not, imo, going to spring up immediately.

I am not telling you what to do. that said, my suggestion is that you be the leader you want (rather than throwing in the towel).

I look at it as, if these orgs don't change, then i didn't spend any money and am no worse off. But by offering money, I am putting my money where my mouth is an providing some small incentive for them to change. If we all band together, it will be a big incentive to change. Then if they change, we will be happy, the ME community and these orgs will benefit by having much needed donations and better names.

 

[justinreilly]

Updated pledges:
I will make the following donations when the following orgs use 'ME' exclusively (except in quotes (and parentheses where possible) when necessary for clarity):

$7,000 (to a research org) for CDC to change "CFS" to ME.

$3,000 for
- WHO
- UK govt

$1,000 (to a research org) for NIH.

I am increasing it to $750 for each org:
- OFFER
- CFI
- CFSAC ($750 to a research org)

- Stanford CFI (to Neuro-Immune Diseases or the like- they treat & study more than just ME)

$250 to ME research for each clinic (or chain):
- Bateman's clinic
- Klimas' clinic
- Teitlebaum's clinic
- the Fatigue & Fibromyalgia Centers clinic chain

$100 to ME research for each website or forum:
- chronicfatigue.about.com
- phoenixrising.me
- mecfsforums.com

I won't criticize CAA anymore if they use only "ME."

ok, well there isn't much chance of say, CDC, changing the name. However, if a lot of us get together and pledge, it will make it more likely, if only because it will be a strong statement from patients that we can publicize.

That's $18,300 to call the disease the correct name. Please take it! My a** will be beyond bankrupt, but very happy.

 

[gregf]

Justin that's brilliant.

I am stepping up as the 2nd person in the JR pledge fund. I will match any donations Justin makes in this pledge, with a limit of $1000 per year.

Come on everyone, if you cannot afford much, do as I have done with an annual cap.

To clarify my original post, I suggest when one makes a donation to an organisation, add a request that they consider progressing the name from CFS to ME/CFS and eventually ME. That is how I did it for WPI, and they began to say ME/CFS. Its quite easy to do and still be polite.

 

[justinreilly]

Thank you, Greg! You're brilliant for pledging the ME pledge fund! : )

I think you're smart to put a yearly limit, as i alluded to before i don't anticipate writing out checks for $18K (especially anytime soon)- for example if CDC by some miracle changes the name tomorrow, then I will scrape together $7K and send it in, but then the other orgs will pretty much have to change their names, so I will reduce my pledges to them at that point.

If I had $18K sitting around, I wouldn't reduce my pledges at that point, but since that money would be putting me in serious debt (if i could get loans for that much anyway) and taking medicine and food off my table (as is the case for all of us), I'm going to have to be ruthlessly efficient in my giving.

So, I'm going to adjust my pledges downward or upward as circumstances warrant (but if an org changes it's name I will honor the current pledge I have up; so if every org changed their names at once, I would honor the full current pledges- $18K at this point; careful what you wish for, i guess!)

i am going to put this up on the wiki where whoever wants to pledge can add in and modify their pledges as they wish. I will post again when I've done this.

One more thought- Orgs that give out money, such as CAA, don't just give it blindly to researchers and trust they will do a good job because those researchers are professionals. If a researcher wants money, they have to submit a proposal to the org and jump thru whatever hoops the org puts up. And this money wasn't even earned by the org- this money is ours, scraped together from social security checks- and CAA execs, for example, take out huge salaries from this money we donated.

My point is, this is our money that we could put to good use by spending on ourselves- for medical treatments, or delivered healthy meals, etc.- if we are going to give it to an org, let's make sure those orgs are doing the most possible good with our money by requiring them to improve (These orgs do the same thing with their grantees with our money). I feel we owe this to ourselves, to these orgs and to all pwME.

 

[usedtobeperkytina]

PANDORA uses ME/CFS, as greg said, to progressively change public to know ME is the appropriate name for what has been called CFS. Now, I personally tell people that I have ME/CFS, which used to be called chronic fatigue syndrome. If there is further questions, I explain that NIH recognizes the illness by the European, and more appropriate name.

Justin, you said it when you said scientists don't understand the power of nomenclature. They are science, they are concerned with facts. Fatigue is accurate, as one of the primary symptoms. However, some public relations, communications or advertising professional would have a totally different understanding. It's hard to get scientists to have respect for spinmeisters.

Tina

 

[justinreilly]

I have started a thread on the wiki with the info:

http://forums.phoenixrising.me/showthread.php?15470-Pledges&p=230364#post230364

I am going to start a new thread to highlight this.