Why is there so little focus on Fundraising?

[lint7]

It surprises how little effort is put into raising funds for CFS research and awareness campaigns.

It seems to me that our time would be used more efficiently if we spent it trying to raise funds to pay professional medical researchers to figure this out rather than reading medical journals and trying to become researchers ourselves.

I've only seen two fundraisers, that I can remember, in the past 5 years or so: Lipkin's microbiome study, and Bhupesh Prusty's "Something in the blood" study. Both were successful.
Why don't we see more of this?

 

[Rufous McKinney]

It surprises how little effort is put into raising funds for CFS research and awareness campaigns.

The ME CFS NGOs do considerable fundraising and we are, it seems, making some progress. OMF now has 5 research facilities... Triple Fundraiser right now.

the new group PolyBio from Harvard- they did not seem to be particularly focused on a lack of money during the recent coordinatoin call, in fact Amy Proul even said something like- we don't want money from our very sick patients...that was somehow suggestive of- money will come...we need the Visions to be Funded. We need visionaries.

Klimas lab just got more money.

What I wish we could fund. Some type of- Patient Advisors or- consultant types who would support the patients who suffer from- Not Being Able to Be Our Own Scientific Review Team and Treatment Experimentors.

Maybe I just did not successfully describe - what I need but i sure know I need..HELP.

Imagine if we had, say 10 Grad Students in 5 fields- At Our Disposal to- review the latest study- and help us actually deploy something. Maybe they could answer direct questions from patients. Maybe we could- start to work up Treatment Approaches to Try. What if PR had- its own actual doctor on full retainer, and THIS is the focus of their existance.

I seem to recall looking recently at a document that was to enhance: treatments from our doctors yet ultimately the treatment section contained almost nothing and mentions Pacing.

Ultimately we have nobody engaged fully in our illness, to talk to and work with. My doctor is better than any other one I've yet encountered, but he isn't following The Mechanical Basis, the folks who I get help from deal with many illnesses and don't really understand this one in the depth required.

Something is "missing".

 

[lint7]

The ALS Ice Bucket Challenge raised $115 million dollars.

What I'm talking about is a grass roots campaign to raise money via small donations, not some appeal to large foundations/governments for funding.

What I wish we could fund. Some type of- Patient Advisors or- consultant types who would support the patients who suffer from- Not Being Able to Be Our Own Scientific Review Team and Treatment Experimentors.

Maybe I just did not successfully describe - what I need but i sure know I need..HELP.

Imagine if we had, say 10 Grad Students in 5 fields- At Our Disposal to- review the latest study- and help us actually deploy something. Maybe they could answer direct questions from patients. Maybe we could- start to work up Treatment Approaches to Try. What if PR had- its own actual doctor on full retainer, and THIS is the focus of their existance.

What do you mean by this? You want support to validate your own personal theories about what is making you sick? Or some kind of collaboration between researchers and patients?

 

[Rufous McKinney]

What do you mean by this? You want support to validate your own personal theories about what is making you sick?

No I'm not seeking any validation of theories. But I'm not able to explain what I need, I guess. When you have no medical doctor to provide- expertise...in ME ...and we have 9000 research studies...and your a patient with severe cognitive symptoms...that go untreated.... undefined...untested....

I know I need help, but I"m not able to obtain it. I"m just imagining how great it would be to- be somehow able to Chat with an Expert.

 

[Rufous McKinney]

The ALS Ice Bucket Challenge raised $115 million dollars.

Ok...thats a nice large number- so how did all that happen? What transpired which ended up creating- this challenge and how was it organized. ALS is- a pretty obscure illness.

So that was a successful action...how might we repeat or recreate a similar Successful Action?

 

[Rufous McKinney]

The ALS Ice Bucket Challenge raised $115 million dollars.

A Wikipedia review of the ALS Ice Bucket Challenge is a pretty fascinating read. It rather only worked that one time and generated considerable criticisms, including the waste of 5 million gallons of water.

You'd have to be pretty clever to come up with another idea- that might comparably generate that type of going viral.

But we could try!

 

[Wishful]

But I'm not able to explain what I need, I guess.

I understood what you meant: having some experts to read through the technical papers to figure out whether they fit the ME observations, or if there are obvious flaws in the paper, or whether several papers support a given theory. If a treatment is suggested by a theory or paper, does it make scientific sense or are their supporting numbers just manipulation?

When I read such technical papers, I'm quite aware of my lack of ability to properly follow the arguments or understand the other biological processes that would be involved. I know I don't have a good feel for statistical claims, or the potential flaws in the study process. I agree that it would be nice to have some group to do this brainwork. However, I'm not sure that this assistance to amateurs is more likely to result in a breakthrough in understanding ME than the same funding applied to proper brain research.

It might make us happy though.

 

[lint7]

Aren't you just describing the peer review process?

 

[Hipsman]

In my opinion it's very easy to lose all hope for humanity with this illness. I think it's common to see family members of someone suffering from cancer for example organize fundraisers or awareness campaigns, while feeling proud about it, but with ME/CFS your lucky if your able to convince them (family members) that it's not "all in mind"... When a celebrity gets cancer or other famous disease they usually make fundraisers for it, but with ME/CFS most celebrities don't even disclose they have it, becouse the public mindset about this illness is soo bad. However, I'm optimistic that post covid ME/CFS will change public mindset for better, maybe then there will be more focus on fundraising...

 

[lenora]

Hello Everyone....There is more awareness of this illness than in the 30++ years that I've been dealing with it.
Computers hadn't even been developed yet when I was diagnosed. I have Arnold-Chiari Malformation and Syringomyelia....ME was a diagnosis on top of all of them.

Fast forward to 2020. It's finally recognized. Researchers who are specially trained in our problems are doing their jobs. The problem we face is an overload of information....some of which will never come to fruition. We have a spokesperson of sorts in Jennifer Brey, and her movie UNREST; this is the best thing that has happened to us in all the years I've had this. A patient "counselor" would be nice, but I don't know that this person/people would be able to give you more than someone who has already been through this.

Now there is hope for some people. Jennifer Brea, the maker of UNREST is now symptom free of ME, and has had her Cervical Instability repaired. (CCI) A proper diagnosis is an absolute must. I hope Jen will add her thoughts to this post. We need to work together, group to group, and this is being done today. It will become even stronger as time passes. Bear in mind that it was only recently discovered that there is a link between many illnesses that end up being lumped together as ME. Learn to follow the latest Research...even counselors can't say for certain that the latest report will be the answer. For most of us, there will be many different answers, never just one.

We should help other organizations that represent ME.

I wish each of you well.....I really do. Yours, Lenora.

 

[Hip]

The ALS Ice Bucket Challenge raised $115 million dollars.

What I'm talking about is a grass roots campaign to raise money via small donations, not some appeal to large foundations/governments for funding.

The ME/CFS chilli challenge was a fundraising idea that tried to emulate the success of the ALS ice bucket challenge. I am not sure how much money it raised, but I doubt it even reached a million, otherwise we would have heard about it.

It might be worth studying the ALS ice bucket challenge to try to figure out why that campaign was so successful. Then we could try to emulate the factors that made it a success, to create an ME/CFS challenge.


I don't think it is the prevalence of ALS that made the ice bucket challenge a success: the prevalence of ALS is around 0.005% (5 cases per 100,000 population — ref here), so quite a rare disease.

By contrast, the prevalence of ME/CFS is around 0.2%, which makes it 40 times more common than ALS. Of course, the fact that life expectancy with ALS is just a few years makes it look serious.

 

[lenora]

@lint7 , @Hip ,@Wishful, @Rufous McKinney ,@Hipsman......Yes, we can and should be able to raise some money ourselves. I've advocated this on other sites, and this is what I've found: Many companies are doubling the amount of money given...e.g. My daughter works for a co. that doubles funds up to $3,500. Thus, I take advantage of this. All donations I make are given through her and the funds are doubled. This leaves some that cannot be doubled, but that's fine. My family in its entirety (all 8 of us) will make donations on our own to various organizations. I don't need gifts at my age, nor does my husband.

Now there is occasionally (very occasionally) a company or individual who will match all funds given that particular day by TRIPLING the amount. I haven't heard anything about that lately, from any source, so if anyone knows, please mention it here. For those who can afford it, this is a great opportunity.

Thanksgiving is coming up...I don't know if you're planning a family get together but if so, please ask relatives to check their companies to see if they're donating to charity by doubling the amount. Then make all donations through this route. However, if someone does know anything about Triple Tuesday (as I think it was called) you can do both...I have in the past. My daughter doubles it immediately, and then the donation that is doubled is given to the org. and it's tripled. It can amount to a great deal for all. I believe a # is required and the moderator may be able to provide this.

For others, IF you can afford it, even $5.00 per mo. can be given to the org. of your choice. Please consider it. If the org. receives funds from the members, the govt. is far more likely to help fund more research. I've seen it a few times in the past. Thank-you....and I wish all of you a pain-free and active day. Yours, Lenora.

 

[lenora]

Hello everyone....I once again want to mention the Amazon Smile program. For every item you purchase on Amazon, a certain small percentage is deducted and given to Amazon Smile. Since 2007 (I believe) Amazon has donated almost $3,000M to charities, since 2013. I looked to see how much my donation amounted to. Surprising it exceeded over $l,800 for approx. the 18 mos. I've been registered. This year my money has been donated to the MEAction Group. So anyone who uses Amazon for shopping can help in this way. I must start thinking about the recipient for next year.

Just go onto Amazon, and put in Amazon Smile and you'll be taken to the proper site and the information will be given to you. True, it doesn't seem like much at the time, but it's like a dripping tap....the sink fills eventually. So if you're interested, do check it out.

I know that donations don't sound very exciting, but they're going tIhey're going to be part of your ticket out of what you're caught in. Each of us can do as much as possible to exit this illness. It's too late for me...but it needn't be for you. I wish you well. Yours, Lenora.

 

[Hipsman]

My family in its entirety (all 8 of us) will make donations on our own to various organizations

The only donations my family gives is 2$ for a homeless guy to buy vodka, he comes to our neighborhood once or twice a year

(Sorry, I thought this was funny...)