Advocacy Brainstorming: The Thread on Threads

justinreilly

justinreilly

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alex3619

alex3619

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Discussing advocacy in detail or a continued debate is off topic for this thread. I have started a new thread for Evidence Based Medicine here:

http://forums.phoenixrising.me/showthread.php?16443-Evidence-Based-Medicine-For-ME-(and-CFS)

This is an important topic. My concept for this thread was a central list of topics so people could jump to and read the thread on each topic. If a topic is being discussed, thats a good sign but it means a new thread is required. I definitely have things to say about EBM, but not at the moment as I have other things I have to do.

Thank you justinreilly for pointing to an old thread on how to get "civilians" involved.
 
Snow Leopard

Snow Leopard

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Some excellent thoughts so far, particularly from illsince1977 and markmc20001.

One thing I am wondering about as one of the first steps is how do we bring as many people together as possible - not necessarily with any formal action, but to simply show that there are many voices that are being unheard. I mentioned in one of Alex's previous threads about a basic 'stand up and be counted' type campaign though I don't have a firm idea of how this could best be carried out.
 
alex3619

alex3619

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Hi Snow Leopard, one of the reasons for this thread is to get us to talk about advocacy itself. We are so busy trying to do stuff that sometimes we forget to ask about what it is we are doing. I am hoping that by discussing ideas we might attract more to be interested in advocating for a better outcome for all of us. Bye, Alex
 
T

Tuha

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I am interested in advocacy since I got worse (3 years ago). I joined a lot of groups and a lot of people asked me about helping with advocacy. I also followed a lot of threads here about advocacy. The main problem which I see is:

We are only talking without taking any action. You will see a lot of good ideas but noone tryied to develop it further. I think we need a good leader who will like to organise the people and to take advocacy actions (not only talking about). I think that there would be a lot of people who would join him.

The last year some organisations asked me about help with some projects or I proposed them a project. But after first enthuziasm from the both side - it was soon away. The communication was bad, I always had to wait for a simply answer some weeks. Even if they like my project and even if I propose to do almost all work alone - I had to wait for weeks/months for their answer. This is really demotivating and I am really not in a mood anymore to do something. Because i see that the people are only talking.

So I would say that well - we are a group of sick people with lack of energy but we are also really bad organised and the groups witch already exist dont cooperate good. Thats why I think we need a good charismatic leader who would be able to create a good organisation, to motivate the patients/people and to take actions (and not only talking).

We dont need to develope special kind of advocacy, we can learn from other succesfull groups like HIV, MS,... We need to take actions.
Sorry if my post is too negativ but I think we have to critic the situation and we have to open our eyes if we want to move further. So this is how I see the advocacy things
 
Nielk

Nielk

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What we need is money, money and more money.

If we want to raise awareness, we need money for advertising, making a documentary, getting journalists involved and for lobbying the government.

Without this, people just either don't know what our illness is all about or don't care because they never heard of it.

I think that once we have people's attention and emotional involvement, that's when we can really reach them.

I think that the documentary in the U.K. "Voices from the Shadows" is very effective. If we can do something similar in the U.S., it would be amazing.

To accomplish anything we need some money first and I don't know how we can accomplish that.
 
Ember

Ember

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illsince1977 said:
We aren't even accorded the respect of a name for this illness. But respectfully, Ember, I don't think yet another fight within the community about whether one has ME or CFS is going to get us to that end.
Click to expand...

Having suggested the accurate and inclusive use of language, I do find your comment here to be disrespectful. I provided a link to another thread where you could have attempted to extinguish debate.

In championing unity, could you please clarify (here or on another thread) who you're addressing when you say, We all have the life altering, life stealing disease that never ends? In championing trust, could you or anyone elaborate on a vetting process for anyone who claims to speak in our name?

illsince1977 said:
I wish I had something more constructive to contribute to the discussion. Sorry if my tone is too negative. We need to bolster one another up to keep the momentum going. And I wholeheartedly support any efforts at raising awareness and advocacy.
Click to expand...

While I applaud your wish to bolster and support others, adopting a negative tone violates the defer judgement, reach for quantity spirit of brainstorming.
 
M

markmc20001

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877
The challenge is finding the researchers with relevant research(most bang for the buck now) and getting them resources without interfering with them or causing them disruption. That is the way I see it.

Objective: Raising money for timely and useful research efforts that have low risk and high reward potential.

Advocacy Mission:

1) Identify, and raise funds from wealthy donors/individuals.

2) Identify researchers with meaningful progress towards research already, and offer to provide financial support or other special talents members are willing to donate. I think this particular decision making process could possibly be crowd sourced to some degree.

3) have individuals offer to donate special talents to advocacy efforts. For instance, some patients created an awesome video. Some here are talented artists. Some others probably know website design. I'm sure their are plenty of talented folks who can donate some labor and ideas, if they can do it on their own schedule and have enough time.

3) facilitate in other ways that can help bring synergies to researchers without interfering and causing disruption.

4) help raise awareness and develop political support for certain research, or news if needed.



potential challenges:

1) donating to the wrong place. faux patient oriented organizations with a proven track record of mis-allocation of funds or plausible deniability.

2) Medical industrial complex employees posing as patients on forums and trying to derail efforts with propaganda, and useless conversations.

3) Electronic communication, where there are often mis-interpretations, and people are quick to express anger. Or worse yet, hitting send before cooling off....etc...

4) Social media is brilliant for crowd sourcing, but also takes on a mind of its own. Somehow a balance of real life and social media need to be merged if advocacy extends too far. The trick is finding the cut off point.
 
M

markmc20001

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877
Ok I got a concept.

Lets say we created a non-profit organization to raise money. Lets call it Patient Response Organization. " PRO's".

So "PRO's" creates a presence on the web where people can learn about, and donate to certain causes that have been screened by PRO's as being legit and productive.

Might even use the web presence to be help with study design review, or maybe just allow review and commentary. The idea is: potential pitfalls and conflicts could be vetted trough crowd sourcing and online commentary. That way donators have a warm fuzzy feeling they are donating to a good cause after reading the study design, comments, and other feedback.

For instance. Researchers design studies that would provide tangible benefits in 5-7 years or whatever is going to yield results soon. The study is put up for review and vetting on the web for a 6 month period before launching.

Once the review period is finalized, An escrow account is opened up for each cause PRO's is going to fund. Of course this is after crowd sourced review and comment process.

Here are some examples of studies Pro's may decide to fund raise for:

1) One that may provide genetic and nutrional treatment insight for Autism, ME, and Cancer. $500000

2) Another program for diagnostics of cognitive dysfunction. $500000

3) Another program is wind powered wheel chairs. $100000000

So PROS developes a website that displays the goals of each study and real time fund raising goals for each. "Viral" fundraising can proceed from that point on. The idea being anybody from around the world can help out! The causes and commentary give good credibility to the researchers getting results!

The exact research study is spelled out for anyone who wants to review, along with the study review comments. So PRO's has a facebook page, webpage, and has other social media presence.

The idea is once a crowd sourcing process is used to identify the most beneficial study, anyone around the world can read teh commentary, and anybody can help raise money for those cause that have been screened by the PRO's.
 
M

markmc20001

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877
Nielk said:
Mark,

Did you see this from CFIDS Association of America? It sounds a little bit like what you just proposed.

http://www.cfids.org/about/thecatalystfund.asp
Click to expand...

My idea was different in a sense the money actually goes to researchers who will produce tangible results. I'm not optomistic their fund has the same goals. Just going on their track record, How many years they been around?

My impression is the CFIDS association has taken in large sums of money, paid excessive salaries, and really hasn't produced any tangible results.

I don't think the CFIDS association have actually funded any researchers did they? Where were when it came to pony up funds for Mikovitz and the WPI? What about funding RichVanK?

Here is the patient poll of the CFIDS association. over 86% patient disapproval.

http://forums.phoenixrising.me/showthread.php?10169-Caa-poll

This thread isn't about the CFIDS association or CAA, but they seem to be a poster child for why our disease has been abused so long and zero progress has been made.
 
D

Dolphin

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17,567
I agree fundraising is important in various ways.
But I just thought I'd point out that there can be a difference between the US and other countries.
In Ireland and I think the UK and some other countries, depending on a few rich individuals to donate is risky. Money is more evenly spread. Significant sums can be raised from getting small amounts from a relatively (large) amount of people.
For example, in Ireland and the UK, street collections can be quite successful. However, in the US, these seem to be much less common in general (and might not get as much support).

There can be other differences between countries.
So in general, strategies that might be good in some countries may not be so useful in another country.
 
D

Dolphin

Senior Member
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17,567
Posting letters and e-letters in reply to full papers

This is maybe pretty obvious but somebody suggested I post the idea here

For people who have the energy to read full papers:
Submit comments/e-letters and even letters for publication in reply to research papers that you are not happy with.

I am very frustrated, looking back, about the low percentage of problematic papers that have been challenged over the years. A lot of people can take findings at face value when there are problems with them, or how they are presented.

I think it (a lack of responses) might even cause a problem by itself - grander and grander claims such as "recovery" and "full recovery" following CBT and GET were made when authors had found that other claims they had made went unchallenged.

My preference is for comments/e-letters and letters for publication that are a bit restrained, concentrating on factual errors, dubious claims, other evidence that was ignored, etc. rather than concentrating more on rhetoric and making more aggressive claims. Perhaps it doesn't have to be done that way but there can be a bit of a tendency to dismiss patients' points in general but I was brought up to believe that anyone from a young child can say that 2+2 isn't five and people should listen. So sticking to the specifics I think has a value.

By doing this and it helped me revise what I had just read, as well as revise previous findings, helping me to remember better, making it easier as time goes on. Also probably in general the wording comes a bit easier with practice.

I'm not sure if this is true in general but I think it may be easier to work up to letters for publication, by writing e-letters/comments. The latter are much easier to write as there is generally no length restriction and one doesn't have to concentrate so much on the language used e.g. using fancier phrasing, avoiding repeating the same word, etc.

Some of us do this but more are needed. Also even if we do with reply to a certain article, we most likely will make all the points possible.
 
Nielk

Nielk

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markmc20001 said:
Hi Neilk,

I think I mis-interpreted your post and got off on a tangent.

I'm going to make an effort to be more careful about my posts. sorry folks.
Click to expand...

Hi Mark,

It's okay :cool:. You have great ideas and I'm certain, actually, I know you didn't mean t hurt my feelings.:D:D
 
Enid

Enid

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If you want brainstorming - flood the airwaves with science (not the nasty little pecularities coming from the psyches UK wise who "think" ? pathetically all the answers). Keep to real science, real pathological findings, real research going on who get so little mention. Burst the bubble of the pseudos.
 
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