Brainstorming for positive and constructive advocacy ideas

[Bob]

With all of the recent negativity, and arguing with each other about XMRV, I thought it might be a nice idea to work on some positive stuff and to talk about ways in which we could all work together to either build community bridges, or to do advocacy work together etc.

It would be nice to find some things that we could all agree on. (Yes, I know it's not very likely, but it might be possible!)

I don't know if it can be workable on such a large and diverse forum such as this, but it does seem like it would be a productive use of the forum, rather than bickering with each other over minor disagreements.

So, any ideas that are positive, constructive, and involve working together for a common goal...

 

[redo]

Good initiative Bob. One of the first things which comes to mind is to advocate for more earmarked money for CFS research. With more than a million patients, they can't be spending as little as they do. So for advocacy, I think posting on the Facebook pages of the congressman (or parliament member) of each owns district. As another PWME wrote, the politicians have learned to ignore calls, email and normal letters. But getting it out and open on Facebook will make an impact.

On top of that I think the patient organizations should work a lot more targeted with the press. To find patient cases which deserve attention, and get the two together. One could write half fabricated articles as press releases and try to get journalists involved. Especially I think articles about the sickest CFS patients (preferably with symptoms such as people who can't tolerate light at all, as it makes an impression), and also about success stories with treatments which help, but aren't covered financially as it is... The latter will help drive the focus away from the whole "you're mental" thing, and it may also help push for funding for medicine...

 

[Bob]

Good initiative Bob. One of the first things which comes to mind is to advocate for more earmarked money for CFS research. With more than a million patients, they can't be spending as little as they do. So for advocacy, I think posting on the Facebook pages of the congressman (or parliament member) of each owns district. As another PWME wrote, the politicians have learned to ignore calls, email and normal letters. But getting it out and open on Facebook will make an impact.

Yes, that's probably something we can all agree on.
So it might be nice for us all to work on a simple letter that people can use and adapt for themselves.

On top of that I think the patient organizations should work a lot more targeted with the press. To find patient cases which deserve attention, and get the two together. One could write half fabricated articles as press releases and try to get journalists involved. Especially I think articles about the sickest CFS patients (preferably with symptoms such as people who can't tolerate light at all, as it makes an impression), and also about success stories with treatments which help, but aren't covered financially as it is... The latter will help drive the focus away from the whole "you're mental" thing, and it may also help push for funding for medicine...

Yes, I've always thought that we need to be more far media-savy in order to get our illness properly recognised.

 

[SpecialK82]

Good thread Bob. I'll start thinking of ideas. Using politician's FB makes alot of sense, it can't be ignored. I suppose we could get responses from the public that would disparage ME/CFS. So we should probably make sure that it's brief but also very educational, so that people understand that our illness is as serious as MS or AIDS from the start.

 

[redo]

I'd also like for people who have been exposed to CBT and got worse to get out in the media. That should be something the patient organizations organize. And I would love it for a PWME to say in the interview that they'd rather be a healthy soldier in Iraq with bullets flying over their head, than be sick with ME and have dr. W perform his CBT on them (pun intended).

 

[redo]

I thought I'd add, they could say "and I don't mean that as a joke", but I don't want to derail the thread. About the getting worse from CBT, it's a serious issue, and I think the ME community should push harder to get that story across as well...

 

[leela]

Great idea Bob.

I am feeling more and more inclined to address the thing that is holding back research and breakthroughs in so many fields:
the patenting of organisms, the for-profit health insurance and pharmaceutical and agricultural industries, the financial and political shenanigans influencing funding and what gets researched, the corruption of the FDA etc.

I really do believe this is, as I've posted before, the Giant Activist Elephant in the room. The system within which we are trying to work, or fight, or be heard, is horribly broken. It is rigged. We must find away to end this insanity.

I think a really good place to start is to END the patenting of organisms. This had changed the face of medicine in a disastrous way.
I have no clue how to do something about this but it must be done, as should the corporate funding of university research programs etc.

 

[alex3619]

Hi, I had some of this debate with IVI in his recent blogs. There is only one thing that gets universal agreement - the lack of funding for research. We get almost nothing, a small fraction of what less common and less disabling diseases get.

Societies and governments complain about how much medical and disability issues are costing. This is a direct results of societal and government inaction on research. Nowhere I have seen is this more apparent than with ME and CFS.

I do think however that this will all change when we can definitively identify the key pathophysiological processes in ME or CFS, and hence biomarkers, although at that point I think the CFS and ME communities will irrevocably fracture. It only takes one really good research finding to change everything. Some time after that I think there will be a final name change - even ME is not the ultimate name.

This could happen at any time. The growing body of research on post-exercise physiology and gut related LPS reactions is very interesting at this time. If we can link both of these to each other or to the functional genetics then we may get a pathophysiological model.

One thing lacking so far though is a detailed investigation of how these physiological and immune issues impact the neurology.

Without a clear focus for the global ME and CFS communities I cannot see us acting in any unified manner. This is not necessarily a bad thing however as it means different groups are pursuing different agendas, and thus this increases the chance we will stumble upon an answer because many avenues are being pursued.

So my primarly goal is simple: support political activity aimed at increasing research funding.

The only area that I would like to see less funding is CBT/GET. They have had a disproportionate amount to the great detriment of more important research.

Those of us who are aware of the issues surrounding CBT/GET in the UK will mostly support opposing this non-science. It should not be taken that everyone claiming to have CFS will support that view. Many in the UK who are diagnosed with CFS probably have ICF or depression, and may benefit from such treatment, and these people will mostly support the CBT/GET claims.

Bye
Alex

 

[RustyJ]

Hi, I had some of this debate with IVI in his recent blogs. There is only one thing that gets universal agreement - the lack of funding for research. We get almost nothing, a small fraction of what less common and less disabling diseases get.

Societies and governments complain about how much medical and disability issues are costing. This is a direct results of societal and government inaction on research. Nowhere I have seen is this more apparent than with ME and CFS.

I do think however that this will all change when we can definitively identify the key pathophysiological processes in ME or CFS, and hence biomarkers, although at that point I think the CFS and ME communities will irrevocably fracture. It only takes one really good research finding to change everything. Some time after that I think there will be a final name change - even ME is not the ultimate name.

This could happen at any time. The growing body of research on post-exercise physiology and gut related LPS reactions is very interesting at this time. If we can link both of these to each other or to the functional genetics then we may get a pathophysiological model.

One thing lacking so far though is a detailed investigation of how these physiological and immune issues impact the neurology.

Without a clear focus for the global ME and CFS communities I cannot see us acting in any unified manner. This is not necessarily a bad thing however as it means different groups are pursuing different agendas, and thus this increases the chance we will stumble upon an answer because many avenues are being pursued.

So my primarly goal is simple: support political activity aimed at increasing research funding.

The only area that I would like to see less funding is CBT/GET. They have had a disproportionate amount to the great detriment of more important research.

Those of us who are aware of the issues surrounding CBT/GET in the UK will mostly support opposing this non-science. It should not be taken that everyone claiming to have CFS will support that view. Many in the UK who are diagnosed with CFS probably have ICF or depression, and may benefit from such treatment, and these people will mostly support the CBT/GET claims.

Bye
Alex

That all sounds very sensible, Alex, however your whole premise rests on a single point: that authorities will get behind the outcomes of biomarker studies. This has not happened in the past and nothing at the moment leads me to believe this will change. Why authorities will not support biomarker findings is a fundamental question which needs answering first.

 

[alex3619]

Hi RustyJ, quite the contrary: what the authorities think about biomarkers wont make a jot of difference in the end. Really good biomarkers that get strongly established in the science will set the agenda for all biomedical research. Furthermore it will directly undermine dodgy research - nobody will be able to claim for example that research on CF patients applies to ME patients if an established biomarker is required and they fail to show it.

Who establishes the agenda: the scientists who research ME and CFS. We in turn support them. What is needed though is a biomarker, or combination of biomarkers, that is so strong as to be highly diagnostic. It will then require that interventions based on subsets of biomarkers

We need government agencies for funding.

We shouldn't allow these agencies to convince us they set the agenda.

This is political as well as scientific. The agencies may indeed try to direct research by controlling funding. However if there is good science backing new or existing biomarkers, and this science is reproduced reliably, it will become increasingly untenable for these agencies to set the agenda their way.

The science controls the agenda. We can influence the funding and support of that science ... but we don't directly control the agenda. Neither do the authorities you speak of. Nor should we let them convince us they do.

Bye
Alex

 

[Aileen]

Great idea Bob.

I am feeling more and more inclined to address the thing that is holding back research and breakthroughs in so many fields:
the patenting of organisms, the for-profit health insurance and pharmaceutical and agricultural industries, the financial and political shenanigans influencing funding and what gets researched, the corruption of the FDA etc.

I really do believe this is, as I've posted before, the Giant Activist Elephant in the room. The system within which we are trying to work, or fight, or be heard, is horribly broken. It is rigged. We must find away to end this insanity.

I think a really good place to start is to END the patenting of organisms. This had changed the face of medicine in a disastrous way.
I have no clue how to do something about this but it must be done, as should the corporate funding of university research programs etc.

I agree the patenting of organisms is a huge problem, not to mention ridiculous. I think the best way to succeed in this is to get together with groups representing other diseases where the patenting of organisms affects them too. One illness will have a hard time getting anywhere but when A and B and C etc all start complaining about the same thing it gets attention and hopefully some traction.

The first logical step then would be fact finding. Figure out what other diseases/disorders are affected by the patenting of organisms. Also list in detail exactly how the patenting of organisms has changed things, one item at a time.
Aileen

 

[Boule de feu]

As always, bravo for your threads, Bob!

An easy thing to do would be to vote for your heroes (Marly Silverman from Pandora) or for 12th May awareness (Aviva contest), so these guys can get money for the CFS work they do.
I have been doing this for a while now. It's quite exciting.
Please join us. We need all the support we can get.

WE NEED ONE VOTE AND MARLY WILL BE IN 11th place. Only the first 10 will take part in round 2.

 

[Nielk]

I just wanted to say that I commend Bob for starting this constructive thread!
Is it possible to find who participated in the CBT/GET studies?
If some would come forward, it would be extremely beneficial to see how they really reacted to the study and the severity of their symptoms when they too part.

 

[Firestormm]

Join and support charities or create them (if you don't happen to think they are doing enough/what you want) perhaps? How many people have been supposedly diagnosed with this condition?

UK 250,000 - 1,300,000 (depending on your prevalence data). How many belong/support existing charities? A mere fraction. Minuscule. Nada. I think the largest charities over here have barely 3-4,000 members. Why? (Rhetorical question kind of...)

When I look at other neuro research in the UK I see charities making major contributions. I mean in comparison to 'us' these are well organised, well funded and well supported. So there is a problem I think.

Half in not most the people who comment on the ME Association Facebook page or on their website are not members. Why? (Rhetorical question kind of...) When does 'advocacy' become all about criticism? Shouldn't it also be about support and promotion of a cause as well?

Anyway, it seems to me that in order to gain momentum and weight with the 'authorities' one needs to be a charity of sorts and to act on behalf of ones members. All these 'pressure groups' one sees about the place I am not convinced carry sufficient power or organisation. Criticising the 'system' ain't gonna get you nowhere. One needs to work with these people to change things not lay into them.

Of course not everyone or every group is like this I am generalising - and sometimes the individual can make a difference. Sometimes being focused and concentrating on the 'little things' can lead to success which can be built upon. But again one needs organisation and expertise I guess - we are after-all patients and unreliable at best.

On the subject of research I would rather see more going into looking at the symptoms associated with the condition and discovering better means of proper diagnosis than looking for any 'cause' to be honest. I don't think enough has been done to 'validate' the broad criteria that are used about the place. And from this research I would like to see specific tests being developed.

Am in my 11th year now and I think chasing viruses should continue for sure (though I don't hold out much hope) but the focus should be on defining my condition. Legitimising it. And to be honest discovering the damage that it has caused within me. Kind of like they did with Multiple Sclerosis? Sure look at my immune system in more detail and certainly use larger patient cohorts and a more intensive scrutiny - but the one thing that in all this time I have lacked - is legitimacy. And better drugs/better availability to help manage those symptoms!

Ditch the 'umbrella' and lets get legitimised. ME-ICC is 'nice' as is the CCC now lets get some qualification, testing and acceptance please

 

[Tuha]

I think there is really time to talk on the all forums how to continue our advocacy. Regarding the last 30 years I dont have impression that we moved forward. It cannot continue like this because then we can forget about the chance for better life. I see the problems everywhere.

Do we have effective ME/CFS organisations? Sometimes I see some small initiatives/actions but actually I dont know much about their actions. I dont want to critic here only but if we look at our situation we cannot say that they were successfull in generally. in the past I tried to cooperate with some of them and most of the time I was disappointed. When we proposed a project, at first there was a big enthusiasme. but then everything took forever - to get an email answer took some weeks, to take the simpliest solution to move forward some months,....of course that with this situation most of the projects finished even before they really started. I can understand that the people are sick, that they have limited energie but it doesnt mean that it cannot work better. we have to take more people who will work for the organisations, we have to be better organised - I see here on forums that there are a lot of people who would help.

just my last bad experience. i was in touch with one european organisations - I think that they have good projects but after some weeks of communication with them i saw that they dont have enough people to move their projects. They asked me if I want to work for them because they miss the people. I said yes - so we just said that we will talk again about - it was in the beggining of july, now we have october and we still didnt talk about even if I asked already several times.
I also proposed them my own project and I could do it really alone I just need an organisation to have behind. They liked it but I again wait for some months that they will confirm it that I can start. I dont know for me its really demotivating and I already wanted to give up already several times.
I dont know, everyone seems to be tranquil, just saying if we waited for so long we have time for taking decisions and actions. I dont know, I think we have everything except time.

Then another question is patients support which is I think really poor. If an organisation does an action, they need to show that behind there are a lot of patients. I worked on a ministry and its really a big difference if you get 100 complaining letters or some thousands. I think we could see good the numer of patients support in those internet contest where we could get some money for ME/CFS organisations. After such a big campaign there were maybe 200-300 patients who voted and asked their family and friends to do it also and it was the simpliest thing to do. Can we move with such a small support somewhere? - I dont think so (I think here we also need an effective way how to inform patients about an action).

So we need good ME/CFS organisations with good projects/ actions and then we need to show the support of many patients. The organisations need to talk to the governements and ask them about their plans to increase funding, build medical centres,....they should tell us their plans for it and if they will not keep their promisses or we will not be glad with their plans then the patients have to take actions (letters, faxing, demonstrations,....). I think its really time for strong advocacy - with the nice one we didnt move.

I also would like to see more funding. I think there are 3 sourcess:
- federal funding
- patients donations
- private donors

we and our organisations have to advocate better for federal funding which is really poor. They know that we have right for more money but they know that till now we are really weak community, bad organised so they just ignore us.
I think also patients should also donate if they can. But it also needs better organsation. Now, when I want to donate somewhere I have impression that my money will not help because noone does it. I think if the patients will see that the others donate and they feel that its worth - they will donate. I think like this we could get some millions a year for research studies.
Then we have private donnors. I found a web site with the biggest US and EU philanthropists. I am in touch with an european organisation and we would like to contact EU philanthropists. If someone would like to join this initiative or to give some ideas you are welcome. then there are a lot of nadations, bussinessmen, rich people, even reach people with ME/CFS who could be potential donnors. Now we have here a good example with that CFI initiative from Hutchinson family. So it can maybe work.
I think in our situation - patients donations and private donnors have the biggest potential to get some money for research.

I think its time to confess that we didnt do our job good. We cannot look all the time for exuses that we are sick, weak, withou energie,.... we have to take solutions how to do it better. and if we will find some solutions how to move then to do it not only talking about. i think we dont have to discover something new - we can take examples from other groups.
So this is how I see our situation, i think its really bad and now for a lot of us its maybe the last moment to improve it - if not it will be too late for us.
So we dont have time!!!

 

[eric_s]

Join and support charities or create them (if you don't happen to think they are doing enough/what you want) perhaps? How many people have been supposedly diagnosed with this condition?

UK 250,000 - 1,300,000 (depending on your prevalence data). How many belong/support existing charities? A mere fraction. Minuscule. Nada. I think the largest charities over here have barely 3-4,000 members. Why? (Rhetorical question kind of...)

When I look at other neuro research in the UK I see charities making major contributions. I mean in comparison to 'us' these are well organised, well funded and well supported. So there is a problem I think.

Half in not most the people who comment on the ME Association Facebook page or on their website are not members. Why? (Rhetorical question kind of...) When does 'advocacy' become all about criticism? Shouldn't it also be about support and promotion of a cause as well?

Anyway, it seems to me that in order to gain momentum and weight with the 'authorities' one needs to be a charity of sorts and to act on behalf of ones members. All these 'pressure groups' one sees about the place I am not convinced carry sufficient power or organisation. Criticising the 'system' ain't gonna get you nowhere. One needs to work with these people to change things not lay into them.

So we need good ME/CFS organisations with good projects/ actions and then we need to show the support of many patients. The organisations need to talk to the governements and ask them about their plans to increase funding, build medical centres,....they should tell us their plans for it and if they will not keep their promisses or we will not be glad with their plans then the patients have to take actions (letters, faxing, demonstrations,....). I think its really time for strong advocacy - with the nice one we didnt move.

I also would like to see more funding. I think there are 3 sourcess:
- federal funding
- patients donations
- private donors

we and our organisations have to advocate better for federal funding which is really poor. They know that we have right for more money but they know that till now we are really weak community, bad organised so they just ignore us.
I think also patients should also donate if they can. But it also needs better organsation. Now, when I want to donate somewhere I have impression that my money will not help because noone does it. I think if the patients will see that the others donate and they feel that its worth - they will donate. I think like this we could get some millions a year for research studies.

I agree with what the two of you have said here. We are many, this is not a rare disease. So the circumstances, apart from our poor health and the uncertainty and sometimes controversy around the illness, are actually quite favourable for us. The prevalence is quite high, the economic impact is severe, we are a big potential market for the pharmaceutical industry, it sounds like things should move by themselves, because the necessary ingredients are there. Unfortunately this is not what happens. Why?

I don't know the answer to that questions, but i guess there are a number of reasons. I feel as if we are still at a point where we have not crossed a certain threshold yet, from where things could then pick up steam and would start to roll. As soon as a biomarker is identified and accepted this might happen. But for the moment it seems to be us who have to give the push.

So, as other people on this thread have said, i think in order to be effective, we need organisations who will do that job. Individuals can have an impact too, but i don't think it's enough. Governments (and we need them), medical institutions, large donors, etc., they all need a serious and reliable partner they can work with. And this can only be an organisation of some sort.

That's why i think people should join and/or support these organisations, and as has been said, found new ones, if they are not happy with the existing ones. And the organisations should work together, where that is possible and makes sense. The Coalition 4 ME/CFS and EMEA are good examples.

At least here in Switzerland, where i'm part of an association, i can see that a big part of the problem probably lies within the organisations. Members often have wrong ideas about ME/CFS and are pursuing tracks that won't help them much and won't move the cause forward. I'm talking about things like homeopathy and such. I've met a number of people who actually believe they can beat ME/CFS with the help of that kind of alternative practitioners. It's like they seem to think ME/CFS means some sort of individual journey, where you need to try one approach after the other to find out what works for you and get closer and closer to getting your health back. I don't think that makes much sense, since it's very costly, consumes a lot of time and energy, and is not the way things work with any other illness i know about. Also it's simply not supported by scientific evidence.

A number of people i've met seem to want help and an answer today, no matter wheter it makes sense, from a scientific point of view or not. And then they forget to make that investment in the future, to push for more research and to donate to it, if possible, which will, at least in my opinion, leave them in this loop forever, trying one practitioner, one method after the other. I think people have to understand that at the moment, unfortunately, the mechanism behind ME/CFS is not known, and there is no treatment that will make a majority of people well again, and so, while they are of course free to go look around for something that might help them, they should do whatever they can to make sure there is scientific, serious, research being conducted in order to finally find out what ME/CFS is and how it can be treated successfully. Where there is not yet enough understanding of ME/CFS and how research works, how it was possible to find treatments for other illnesses, like we want it to happen in our case as well, organisations first have to educate their members about these things. Before this has happened, an organisation will not be able to do much.

 

[Nielk]

Would hiring a professional Public Relations expert be a crazy idea?

 

[Firestormm]

Evening Nielk,

I have seen the same question asked of existing charities. My professional experience with such PR companies suggests that you have to be pretty darned clear about what you want them to do and have the money to do it well before engaging with such people. Not always as easy as it might sound - and I do think compared to 10 years ago my condition has a far higher and more positive profile than it ever did then.

Would be interesting to know if some of the big UK Charities (MS Society or Cancer UK for example) do employ such people generally or if they use in-house talent. Again you would have to be very specific with what you wanted to achieve - promote a particular campaign or a call for membership or awareness - for example.

Couldn't event tell you now how much these organisations charge to be honest - am sure though that a bit or research might reveal this. I think the ME Charities in the UK simply do not have enough funding to want to do this - they would perhaps rather focus on their main priorities and/or do it themselves as best they can.

 

[Aileen]

Evening Nielk,

I have seen the same question asked of existing charities. My professional experience with such PR companies suggests that you have to be pretty darned clear about what you want them to do and have the money to do it well before engaging with such people. Not always as easy as it might sound - and I do think compared to 10 years ago my condition has a far higher and more positive profile than it ever did then.

Would be interesting to know if some of the big UK Charities (MS Society or Cancer UK for example) do employ such people generally or if they use in-house talent. Again you would have to be very specific with what you wanted to achieve - promote a particular campaign or a call for membership or awareness - for example.

Couldn't event tell you now how much these organisations charge to be honest - am sure though that a bit or research might reveal this. I think the ME Charities in the UK simply do not have enough funding to want to do this - they would perhaps rather focus on their main priorities and/or do it themselves as best they can.

Perhaps it would be possible to get one of these professionals to donate a small amount of their time and expertise to give advise on a particular issue. As you said, it would have to be a specific question. But even if we could pick up a few pointers it would be a start. For example, what is the best way to advertise a one-time event, say a conference or May 12? How can we get the biggest bang for our advertising buck? That might be a good starting place.

 

[Aileen]

Another question for the PR person, or anyone for that matter. How on earth do you get people to vote in these online contests? Some of us have been turning ourselves inside out trying to get people to vote yet only a few people do. I even put a question to the non-voters on another community (a private one) asking them to please explain to me why they didn't vote so I could understand what the problems were. I stressed they would not be judged in any way and they could get ahold of me privately. I got no response. We are giving people step-by-step instructions, inviting people to ask for help if they need it, stressing what the money is for and how much the people behind the organizations/projects have done for them ... but not much. Any ideas?