What if every patient would „just“ give 50 dollars to ME/CFS research? We have to step up!

[bread.]

What if only every fifth me/cfs patient would give that money to fund research?

I know, many people with me/cfs struggle from day to day financially, but 50 dollar (or just 10 dollar) a year seem realistic in almost every kind of situation, doesn‘t it?

I do not see the right kind of marketing (OMF could do it if they would pursue a more modern and aggressive approach) in place to get patients to understand that this is the best possible way to make a treatment more realistic, it is the best bet you can make as a patient, the 25th kind of overpriced supplement will bring you nowhere.

Think of a „gofundme“ like approach for single, specific studies that a board of scientists (OMF and Solve Me/cfs could jump in for example) deemed to be a good next step, these studies could be explained openly and easily accessible for the broader community which makes it much more likely for people to step up!

Right now, people have to trust organizations blindly when giving money away, having no perceived active role, making it much less likely to give in the first place, it makes a huge difference if you know for what exactly your money has been used.

I am lucky enough to have some kind of financial independence, I gave quite a bit of my money away for research, I would give more, but do not want to trust blindly anymore, like most people I guess.

We have to step up the game, on both sides of the game, patients and organizations like OMF have to push harder, nobody will do it for us.



@Janet Dafoe (Rose49) @JenB

What are your thoughts on this? ty!

 

[borko2100]

I think people would be more willing to give money to organizations if they knew exactly on what research the funds would be spent. Better yet let the patients decide themselves! You could call this crowdfunded research. If patient A suffers from symptoms Y and Z that patient would obviously prefer to fund studies that investigade symptoms Y and Z rather than X.

 

[Murph]

There is something to this idea. Polticial campaigns have got quite good at activating many small donors, instead of relying on the traditional approach of a few big ones.

 

[bread.]

This could be „easily“ done by this community. Problem being, nobody tries, I would love to try but I am way to severe, many patients cannot advocate but I am sure would like to give money!

 

[southwestforests]

Sounds like an idea but it won't be getting any money from me since my Social Security Disability is about 14 dollars a month below the poverty level for a single person with no dependents because it is based on working income and my health has always been a mess which prevented me from working jobs which had middle class income levels. That 50 will get spent on myself.

 

[bread.]

Sounds like an idea but it won't be getting any money from me since my Social Security Disability is about 14 dollars a month below the poverty level for a single person with no dependents because it is based on working income and my health has always been a mess which prevented me from working jobs which had middle class income levels. That 50 will get spent on myself.

fair enough.

What I am saying is:

You could also do 5 USD, the question for every individual to ask themselves is what you would miss for that 5 dollar in a matter of 365 days?

You can do the math, take 5 and divide it by 365, that would be your daily „I miss out rate“. What could you buy for that?

Every patient giving 5 dollars would be equivalent to 100 million dollar a year worldwide, thats what, five fold of the current spending into me/cfs research?

 

[southwestforests]

Well, let's see ... A Taco Bell box meal deal is 5 dollars and I really don't need to be eating the cheese, tomato, or flour ... but ...

 

[bread.]

Well, let's see ... A Taco Bell box meal deal is 5 dollars and I really don't need to be eating the cheese, tomato, or flour ... but ...

Do you have a very low BMI?

If not, you can do it, for the team!

 

[geraldt52]

... the 25th kind of overpriced supplement will bring you nowhere...

Several years back, I tried to get people on PR to stop their supplements for one month, and donate that money to Ian Lipkin's research. I pointed out at the time that a bonus might be that people would discover that those supplements they were taking were useless, or even harmful, anyway. I was mildly crucified for it. I found out that people love their supplements.

I've found nearly all supplements to be perfectly useless, and some to be more than a little harmful...which is why the manufacturers don't want anything to do with double blind testing. I think that more than a few people are making themselves much worse than they need to be by the number of supplements they are taking, but that's just my opinion. I do know that the collective money spent on supplements would be a huge boon to research.

 

[RL_sparky]

I think people would be more willing to give money to organizations if they knew exactly on what research the funds would be spent. Better yet let the patients decide themselves! You could call this crowdfunded research. If patient A suffers from symptoms Y and Z that patient would obviously prefer to fund studies that investigade symptoms Y and Z rather than X.

Here's one that is worthy and still needs help to fully fund:

 

[Lieselotte]

I think that some of the issue is that the ME orgs like OMF put most of their effort to get money from patients/patients' families.

Maybe I am naive, but I think there are people who give to cancer research without having had cancer themselves or having a family member with cancer. If we keep tapping our own population, there are only so many dollars there. We need to reach out to the general population in a way to get them to see that this is a worthwhile cause, and that they should donate.

 

[nandixon]

At the present time, I would only give money that can be specifically designated for use in discovering what the "something in the blood" is.

If this disease was ALS, and it had been found that something in the blood plasma of ALS patients caused healthy cells to have ALS characteristics, can you imagine the uproar that would occur if every researcher was not actively pursuing what caused that?!

The problem with research scientists - and I used to be one, so I know - is that actually finding a cure/treatment for the patient is always several places down in their hierarchy of what's important (after the researcher's particular scientific interest, sheer scientific curiosity, earning a living, obtaining grant money, etc.).

We need to get them directed towards finding a treatment in the most efficient way, because they are definitely not interested in efficiently figuring out the disease but rather in the new scientific discoveries they can make along the way. They don't care how long that takes. In fact, from their point of view, the longer it takes the better.

So the first thing to do is figure out what the "something in the blood" is in ME/CFS patients.

If that leads to nothing then I believe the next step is to have a major paradigm change in how ME/CFS studies are done. No more fishing expeditions using heterogeneous cohorts of patients who have been identified based on their symptoms alone. That failed approach has been repeated countlessly for decades and it needs to stop.

Patient cohorts instead need to be selected based on being as closely identical as possible with respect to ALL of the following: symptoms, bloodwork AND drug and supplement response.

I think it would be particularly useful to have these homogeneous patients share in common an especially positive response to a drug. That positive response could then be investigated by various testing both before (after a washout) and after administration of the drug.

I believe I saw recently where, finally, one researcher was going to do this. But even then, I wasn't entirely sure they were really fully appreciating just how useful that approach could be and how that that should be a paradigm for ME/CFS research because of the heterogeneity of the patient population that exists.

 

[percyval577]

The problem with research scientists - and I used to be one, so I know - is that actually finding a cure/treatment for the patient is always several places down in their hierarchy of what's important (after the researcher's particular scientific interest, sheer scientific curiosity, earning a living, obtaining grant money, etc.).

We need to get them directed towards finding a treatment in the most efficient way, because they are definitely not interested in efficiently figuring out the disease but rather in the new scientific discoveries they can make along the way. They don't care how long that takes. In fact, from their point of view, the longer it takes the better.

From a wide perspective, science is an open process. You don´t know what will turn out to be important and what not. It´s a kind of a game, and the more are involved, the greater is the probability that something practical will come out.
This does - hopefully - not say that there wouldn´t be reasoning at work -. With or without reasoning eg, it could be that mecfs is some stem cell problem.
I myself ask the question, what would make it possible that there is a delayed worsening after exertion? Why would pacing include to shift the kind of exertion, maintaining the same amount of exertion? I would consider this to be the entry, though it is obviously open to everything in such a complicate web like our body.

I've found nearly all supplements to be perfectly useless, and some to be more than a little harmful...which is why the manufacturers don't want anything to do with double blind testing. I think that more than a few people are making themselves much worse than they need to be by the number of supplements they are taking, but that's just my opinion. I do know that the collective money spent on supplements would be a huge boon to research.

If you would need, say 4 amino acids out of 20 for a pronounced action, then there are 4.845 possibilies. If the order would be important in which you take these four amino acids, then there are 116.280 possibilities. And there are not only 20 protein building amino acids,no, there are vitamins, and minerals and even so forth as well.

After all, to handle supplements might be more difficult than one might think, and may well be subject to a learning process. A forceful combo might even be dangerous enough as well.


Finally, nobody has looked at the properties of the halfway known pathogens which obviously can trigger mecfs. Researcher are interested in what they are interested, they are not too smoothy in an overall looking manner, haha. I tra, and hope this will hold the water: VitD (almost everything and nothing), ion currents, maybe acetate, which is especially interesting because it is very cheap, I also spent the huge amount of 40 EUR for proline, let lone all the printings. As soon as I am not anymore "somehow" chaotic I will buy a new printer which will print cheaper, and maybe I will manage to donate some money.

 

[percyval577]

If that leads to nothing then I believe the next step is to have a major paradigm change in how ME/CFS studies are done. No more fishing expeditions using heterogeneous cohorts of patients who have been identified based on their symptoms alone. That failed approach has been repeated countlessly for decades and it needs to stop.

Patient cohorts instead need to be selected based on being as closely identical as possible with respect to ALL of the following: symptoms, bloodwork AND drug and supplement response.

I think it would be particularly useful to have these homogeneous patients share in common an especially positive response to a drug. That positive response could then be investigated by various testing both before (after a washout) and after administration of the drug.

I believe I saw recently where, finally, one researcher was going to do this. But even then, I wasn't entirely sure they were really fully appreciating just how useful that approach could be and how that that should be a paradigm for ME/CFS research because of the heterogeneity of the patient population that exists.

It might well be thinkable that the heterogenity can hardly be categorized. Eg say, the dopamine system is a major part, it might well allow for this widespread range of symptoms in a completely flexible manner. It also could have been affected from various constellations. (The best hope here might be genetic or epigenetic analysis, I think.)

 

[nandixon]

It might well be thinkable that the heterogenity can hardly be categorized...

That is possible, but we know from how unreproduceable virtually all of the studies to date have been that at least some attempt now needs to be made to go beyond categorizing patients for research purposes based simply on symptoms alone. One definition of insanity is doing the same thing over and over again, but expecting a different result. That seems very applicable to ME/CFS research here-to-date.

(I didn't mention it earlier but another issue is to not be including in studies any individuals who have been ill for less than at least 3 years and preferably at least 5, because there's too much risk of including either (1) people who have a self-limiting case of Post-Viral Fatigue Syndrome that will eventually resolve on its own, or (2) people whose true disease hasn't fully manifested itself or who haven't had enough diagnostic testing. Case in point being the recent inclusion of a patient who actually turned out to have Parkinson's(!) in what I believe to be an essentially useless ME/CFS study because only patients who have been ill less than 3 years are being studied.)

 

[borko2100]

At the present time, I would only give money that can be specifically designated for use in discovering what the "something in the blood" is.

If this disease was ALS, and it had been found that something in the blood plasma of ALS patients caused healthy cells to have ALS characteristics, can you imagine the uproar that would occur if every researcher was not actively pursuing what caused that?!

The problem with research scientists - and I used to be one, so I know - is that actually finding a cure/treatment for the patient is always several places down in their hierarchy of what's important (after the researcher's particular scientific interest, sheer scientific curiosity, earning a living, obtaining grant money, etc.).

We need to get them directed towards finding a treatment in the most efficient way, because they are definitely not interested in efficiently figuring out the disease but rather in the new scientific discoveries they can make along the way. They don't care how long that takes. In fact, from their point of view, the longer it takes the better.

So the first thing to do is figure out what the "something in the blood" is in ME/CFS patients.

If that leads to nothing then I believe the next step is to have a major paradigm change in how ME/CFS studies are done. No more fishing expeditions using heterogeneous cohorts of patients who have been identified based on their symptoms alone. That failed approach has been repeated countlessly for decades and it needs to stop.

Patient cohorts instead need to be selected based on being as closely identical as possible with respect to ALL of the following: symptoms, bloodwork AND drug and supplement response.

I think it would be particularly useful to have these homogeneous patients share in common an especially positive response to a drug. That positive response could then be investigated by various testing both before (after a washout) and after administration of the drug.

I believe I saw recently where, finally, one researcher was going to do this. But even then, I wasn't entirely sure they were really fully appreciating just how useful that approach could be and how that that should be a paradigm for ME/CFS research because of the heterogeneity of the patient population that exists.

agree 100 percent, homogenous cohorts could lead to a breakthrough, only if researchers would listen to us

 

[chger]

From my Point donating Money to Advocacy Groups that can Build up pressure (scientifically explained and Backed up by current research results) on the NHS / Health government for more funding, increase Awareness about that disease is needed.
Also if The Advocacy Groups will Point out what is the calculated costs for the economy due to ME / CFS often disabled to Work, need Social care. And also Show what is the possible benefit for the Economy if There is a Therapy that can improve many patients back to the Level being able to Work again --> Show the benefit Why they should Invest in ME/CFS. I feel like sadly Money is the only Thing that Counts. Show Some Kind of *return of invest*

 

[Uknmy]

Several years back, I tried to get people on PR to stop their supplements for one month, and donate that money to Ian Lipkin's research. I pointed out at the time that a bonus might be that people would discover that those supplements they were taking were useless, or even harmful, anyway. I was mildly crucified for it. I found out that people love their supplements.

I've found nearly all supplements to be perfectly useless, and some to be more than a little harmful...which is why the manufacturers don't want anything to do with double blind testing. I think that more than a few people are making themselves much worse than they need to be by the number of supplements they are taking, but that's just my opinion. I do know that the collective money spent on supplements would be a huge boon to research.

I figured out very quickly that supplements made me feel significantly worse (you're not "herxing"). I think a lot of people would improve if they stopped overwhelming their body with that stuff.

I donated to Ian Lipkin. Didn't he get sued or something? Where did that money go?

 

[Sarah94]

The problem with research scientists - and I used to be one, so I know - is that actually finding a cure/treatment for the patient is always several places down in their hierarchy of what's important (after the researcher's particular scientific interest, sheer scientific curiosity, earning a living, obtaining grant money, etc.).

We need to get them directed towards finding a treatment in the most efficient way, because they are definitely not interested in efficiently figuring out the disease but rather in the new scientific discoveries they can make along the way. They don't care how long that takes. In fact, from their point of view, the longer it takes the better.

That's not true. Ron Davis is desperate to find a cure for his son. I know that several other researchers also have similar motivations, due to having family members or friends who are sick with this condition.

 

[nandixon]

That's not true. Ron Davis is desperate to find a cure for his son. I know that several other researchers also have similar motivations, due to having family members or friends who are sick with this condition.

Yes, both him and Maureen Hanson. So in that case I think they need to get together ASAP and do what I mentioned a couple days ago, and not be dragging things out anymore by working mostly independently and by following the far too slow traditional scientific method:

But if these researchers really wanted to find answers as quickly as possible they would either:

1. Courier over Hanson's exosome isolate to test in Ron's nanoneedle;

or if that's not feasible then

2. Have Hanson employ an alternative impedance testing method at her end (there are several that might possibly work as a substitute for the nanoneedle) to see if her exosomes when dissolved in healthy plasma cause healthy cells to give an increased impedance signal with salt stress.