A Patient's Perspective on Rich Carson's ME/CFS Research Funding Appeal October 24, 2012

[*GG*]

How can research funding be generated so that the very ill and financially depleted ME/CFS patients do not have to pay for it themselves?


Following is one patient’s response to a recent letter from ProHealth founder Rich Carson & Patient Advocate Courtney Miller (You Can Make a Difference) asking for ME/CFS patient contributions to help fund the Simmaron Foundation’s flagship NK cell dysfunction study.

________________________________

To Rich Carson and Courtney Miller:

I've been thinking of this request and have finally realized why it offended me.

I'm wondering how many cancer patients have been asked to donate their own money to cure themselves and others. I doubt many, if any.

Seems like the cancer ‘industry’ focuses on public awareness and fundraisers instead of asking the ill to basically pay to heal themselves. There's already a big burden on Fibro/ME/CFS patients to do this themselves.

Insurance doesn't pay for many of our required or desired medical care/treatments; or for the practical aspect of our daily physical needs. For example:

• Insurance doesn't pay for someone to clean our houses, or do our grocery shopping / cooking / cleaning - these all come out of our own pockets.

• As do ‘experimental’ (aka, non-FDA approved treatments, which have been acceptable in many other countries for many years).

• Insurance companies also do not cover massages, and some not even chiropractic, or only minimal chiropractic visits.

• Additionally, insurance doesn't cover the multitude of supplements that we should all be taking - or at least trying - according to many doctors specializing in Fibro/ME/CFS and your website, among others who focus on the Fibro patients.​

May 12th is National Awareness Day. But I first heard of it last year, on the day, so I couldn't really do much in the way of advising my doctors, chiropractic, massage therapist, etc. so they could make all of their patients aware through bracelets, informational signs, etc.

• Where are our fundraising ‘walks,’ and other fundraising events to help us and make others aware of our plight?

• What is our ‘color’? [And is this generally recognized?]

• Why do we get ‘a day’ and not a full month, like many cancers?

• Where are our commercials (not pharmaceutical - which commercials are basically un-informative, incorrect and aggravating)?


cont'd

http://www.prohealth.com/library/showarticle.cfm?libid=17653​

 

[*GG*]

I think this person brought up some good points and some ideas for fundraising.

GG

 

[Sasha]

I like the idea of raising awareness and getting the general public to donate, and I think that should be pursued, but I think that Rich Carson (sick with ME since 1981) and Courtney Miller (whose husband has had ME for over 20 years) are right to ask for funding through the channels available to them. They're not, as far as I'm aware, only asking people with ME but people to whom they have access: the Prohealth site for Rich Carson and the Simarron supporters' mailing list (I think) for Courtney Miller. Courtney Miller got her call for funding out big-time when she hit up President Obama! I think she's doing a great job and I think we should support her and Simarron.

And yes, if there are ways to raise awareness to get funding from the public, then great. The ME charities already do this as best they can, as far as I'm aware but presumably they're hampered by the vicious circle of poor public perception of ME and lack of funding.

 

[dannybex]

I like the idea of raising awareness and getting the general public to donate, and I think that should be pursued, but I think that Rich Carson (sick with ME since 1981) and Courtney Miller (whose husband has had ME for over 20 years) are right to ask for funding through the channels available to them. They're not, as far as I'm aware, only asking people with ME but people to whom they have access: the Prohealth site for Rich Carson and the Simarron supporters' mailing list (I think) for Courtney Miller. Courtney Miller got her call for funding out big-time when she hit up President Obama! I think she's doing a great job and I think we should support her and Simarron.

Well, if you look at Carson's letter -- it seems to be addressing ME/CFS patients alone. But I find it galling mainly because they say they need only $20,000 more to complete funding of this initial study, an amount that I would think Carson (a very successful businessman, both before and since becoming ill) could come up with, couldn't he?

 

[Valentijn]

ME patients have money?

 

[Sasha]

But I find it galling mainly because they say they need only $20,000 more to complete funding of this initial study, an amount that I would think Carson (a very successful businessman, both before and since becoming ill) could come up with, couldn't he?

Yikes!

Every now and again, I have a fantasy of what I would do if I won £1 million in the lottery (quite a challenge when I never buy a ticket) and how I would use the money to help ME research. The last thing I would do would be to look at all the projects that were asking for funding and fully fund them. I think it would be much more effective to spend bits of the money on a series of projects and invite other donors to join in. I think that the total money donated that way would be much, much more than my million.

I don't know anything about Rich Carson or whether he's got a spare $20k to drop and I don't feel comfortable discussing what any named individual should do with his/her money. For all we know, he's already donated shedloads behind the scenes. But I don't think it's any individual's responsibility to fund research for all of us. I think he's already doing a great job by making the efforts he's making.

Terry Pratchett, for example, is a very wealthy man and he very publicly donated $1 million to research into Alzheimer's. He could probably afford to donate much more, but the work he has done on raising awareness has had a huge impact (here in the UK, at least), well beyond what even his wealth could have bought.

Fact is, we need millions of dollars, not just tens of thousands, and to get that amount, we need the millions of ordinary PWME to be regularly donating small amounts. I don't mean the people who are broke, but the people who could spare $20 or $30 a year. A million PWME in the US, that's $30 million. That funding level is beyond our wildest dreams at the moment but it's in our reach if people would only donate in large numbers.

 

[snowathlete]

We should have fundraising, walks, adverts, chuggers etc...but we don't. I feel pretty sorry for myself and angry at society and government neglect but the worst thing I can do is focus any of my negative energy against people who want to do research on my illness. God knows there aren't enough, so I ain't going to be offended at those people asking me to help out with a tenner toward it because they don't have the access to funding that I already think they should have, because they are in the same boat as me!

I do not have much much cash but I can afford a tenner now and probably again in a few months. So can many of you out there.i don't care who pays for it, I just want research to happen!

Regarding us getting the other things that we need, We so have some ME charities, so why don't we ask why they dont do more fundraising? maybe they cant afford the capital to start and that is something we, collectively, can donate to get the ball rolling.
I mean, I used to hate getting stopped by chuggers on my lunch break back when I could work, but they are effective, they bring in cash for charities for more fundraising and research etc. they also help inform the public of the reality of the illnesses they represent.

 

[taniaaust1]

Regarding us getting the other things that we need, We so have some ME charities, so why don't we ask why they dont do more fundraising? maybe they cant afford the capital to start and that is something we, collectively, can donate to get the ball rolling.

I think the ME charities already do whatever they can and need more volunteers helping them (after all that is all charities are..groups of volunteers0. (I know the aussie charity ends up putting a lot of money into research, most of aussie CFS research has been funded by charities).. and the ME/CFS societies too have a tendency to being run by volunteers who actually have ME/CFS themselves and often struggling.. no one is managing to do fundraising like other orgs such as the heart foundation etc etc do.

I was only thinking about it today about where our fund raising is lacking compared with other orgs.. in past week, in my postal mail, Ive received EDUCATION and fund raising material (these two things GO TOGETHER so valuable in both ways in efficient fund raising) from two well known different orgs. This helped me to see that the very successful orgs are using a certain fund raising method.. and made me wonder.. why arent we? We need to be doing something like this.. serious fund raising.. Im sure the big orgs wouldnt be using this method for fund raising if it wasnt quite successful to them. Im sure this is something we could do (get with charity and sort this out to be happening or at least seriously tried to work out what the return would be if 100 of the following got sent out?)

These letters sent to me (I'll post them at bottom) along with telling a sob story (to trigger off emotions so people are more likely to donate) also included with them a picture or drawing of the child or animal the sob story is about (so has vision attention is gotten too.. the one from the WWF-Australia was extremely horribly graphic and disturbing... where as the heart foundation had the picture of the cute young boy who lost his dad due to heart issues).
(with ME/CFS a picture of a sick cute child in bed could be used with their story about how they havent been able to go to school all year due to the illness or someone having to be nasally fed due to the illness.. any image to attract attention to how severe it can be).

These big orgs thou also inform each other whenever someone donates so they can target those they know are more likely to donate, so I guess that would likely help too. They also did include a few cards as a gift for someone if they donate or not (but I personally think that just a emotionally grabbing letter with a good picture to pull at heart strings could do okay with a gift if someone had never donated before).

If someone started this officially up and worked with one of our research orgs to raise money for its research... it could end up being self funding the fundraising on top of getting research research money and just as importantly.. EDUCATING people about just how bad ME/CFS can be.. After a few years one would have a list of likely donators to target each year, so return coming back would be better then when one started, and with time the list of more likely donators could grow (i say once a year cause I get put off of donating anywhere if targeted too much)..

first page of both those orgs fund raising letters .. this is what I purpose we (ME/CFS community) work with a ME research charity (eg Alison Hunter Memorial Foundation or a group like it which supports our good research) to get happening (the picture wasnt on the actual letter but separate.. I dont see why one couldnt be at the end of the letter thou)

I worry a bit putting that here as this idea cause it hasnt been done, if the CFS psych lobby get wind that we are arranging serious fundraising.. ir could be done by the wrong ones (these forums get watched) to put out poor ME/CFS info and get more funding for psych illnesses and screw up anyone else doing it for the good research orgs.

 

[beaker]

what is a "chugger" ?

 

[Sasha]

what is a "chugger" ?

It's short for "charity mugger". I don't know if you have these in the States but there are loads in the UK. They are the young (usually), terrifyingly extravert and bouncy people in tabards who stand in the street and try to get you to set up a standing bank order to make regular donations to the particular charity they're representing that day. Big charities such as Amnesty, British Heart Foundation and so on use them.

When I was working, because of the location of my workplace and my home, I would be approached literally 20 times a day by these people. In the last ten years I've probably been approached two or three thousand times. That kind of thing is how they got the name "chugger".

 

[snowathlete]

Chugger = charity Mugger. Typically paid fund raisers on the high street. They sometimes get bad press. I find them annoying. But they are effective!
Most charities, certainly sizeable ones employ staff not just volunteers. Volunteers lack the skills and health necessary to take a charity forward as a big sucseful organisation. That's not to say volunteers are not needed. Essential even.

Chuggers cost money. When you sign up for a direct debit on the street usually about the first year of donations is break even, but many keep donating for years to come. The return in investment I'd high which is why charities do it!

Realistically, at first you need to reinvest the money in more fundraising until you have a sufficient foundation to fund research.
There is a site on the net, forget its name but its social media based fund raising for ME. Been running about three years, looks quite good but only managed about 3k $ in that time. They want to fund research and have good ME doctors on the sterering committee but they should probably look to invest that cash in professional fundraising to generate enough cash to be effective.

Really charities run well are businesses within a unique market. That's how they should be run because that's how they can have the most effect. I think ME needs a charity like this, whether a new one or an existing one that steps up to the mark.

 

[dannybex]

Every now and again, I have a fantasy of what I would do if I won £1 million in the lottery (quite a challenge when I never buy a ticket) and how I would use the money to help ME research. The last thing I would do would be to look at all the projects that were asking for funding and fully fund them. I think it would be much more effective to spend bits of the money on a series of projects and invite other donors to join in. I think that the total money donated that way would be much, much more than my million.

I don't know either precisely how well off Mr. Carson is, and could be totally off base here. But if he (or anyone) has a net worth of a million or more, then $20,000 is like $2 for most of us, and it isn't fully funding the research -- it's just what they need to finish funding it. I agree -- it's important to not put all of one's eggs in one basket.

Mainly, it just seems like there should be a lot of other business-type connections that could or should be explored before patients, many of whom are on SSI or SSDI, are asked for donations.

 

[SickOfSickness]

I was curious to see if we had a color. I've never heard of this before. Have you guys?
http://www.blueribboncampaignforme.org/Blue_Ribbons.html