Brainstorming for positive and constructive advocacy ideas

[alex3619]

Hi, in my opinion the primary problem is the vast majority of the global ME and CFS population are cut off from advocacy by various factors. Some are too sick to use a computer or get real life support - so if they have carers its the carers who should join. I know some do.

Some may not be able to afford internet or even travel to local support groups.

Most however are hiding their CFS diagnosis, in my opinion. The number of people who I have met who admit to CFS but wont say so publicly dwarfs the number who I have met (not counting forums or CFS society meetings etc) who openly admit to CFS. Those who do claim CFS have recovered ... which makes me doubt the diagnosis. However, why is it that recovered patients admit to it and not the sick?

Someone who is hiding their diagnosis may not be open, may not search forums, and may not join a society. This means they are cut off.

Why do we hide? Firstly the issues that arise from being open about the illness are frustrating and exhausting. Then there is the stigma and misunderstanding factor - fatigue, really?, you don't look too tired, everyone gets tired, etc. Then there is the confusion about what is wrong with us and what we should do about it. The doctors are either confused or ill-informed for the most part, the number of doctors who understand this illness are low in number, and even those will admit we don't understand the cause or really know how to treat it.

The icing on the cake of course it the recent advice, especially by biopsychosocial advisors, that we should not become involved in support groups. This is of course reinforced, at least in attitude, by the old Wikipedia. The current Wikipedia entry is not as bad, but still not good. Wikipedia is likely to be the first place most newly diagnosed patients will go to.

Along with confusion and lack of information is dis-empowerment. We tend to trust authorities as we are too sick to fight until we realize of course that most of the authorities are wrong about our illness.

Finally there is the problem of diagnosis. Most with CFS or ME are probably not diagnosed yet, particularly in countries which do not recognize this problem. I just read something about how in Malta (? irrc) ME or CFS are not considered grounds for disability.

I have been wondering if in addition to finding research funding, the other main goal of advocacy should be reaching out and empowering all those who are not involved, helping them to join us in advancing our common interests. I know others have also expressed this view over the last several years. The question is: how do we reach out and contact the majority of patients?

Bye
Alex

PS On advocacy and outrage you might like to read:

http://johnherd.wordpress.com/2011/10/10/a-time-for-outrage/

 

[justinreilly]

Hi Guys,

I agree our orgs have not been effective. This is basically because CAA does not represent patients and has not held CDC and NIH enough to account. We need to get uppity and cause a scene like the AIDS patients did.

I feel that we need a real org that will lobby hard for all the needed change and that this would be our biggest bang for the buck by far (rather than directly funding research). I am slowly going in that direction with my ME law and policy center, but very slowly as i am sick like all of you.

once an org gets itself set up and a little cred, the most important thing I think is seeking out grants from orgs outside of the ME world because they are the greatest source of money and also because a dollar out of the pocket of an ME patient is a dollar that that patient could have used for medical care, etc. CAA is very successful at getting grants; these grants then allow for healthy employees to do the work (and in CAA's case allow for huge salaries for Kim McCleary, Suzanne Vernon and their accountant).

i encourage people not to donate or 'join' CAA as they are counterproductive. I think a good way to have influence is for us to join our local/state orgs and then be the person who reps that org to the coalition4mecfs. I am uncomfortable with Cort having so much influence with that org. More patients joining would make for a better perspective for that org.

You could also join IMEA. It seems, from what i have heard, that PANDORA basically is the Marly Silverman show. If you agree with her then great, work together. I don't entirely agree with her; i think she should take a harder line with CDC and NIH; so I haven't joined.

 

[Guido den Broeder]

One idea that I have, is that we could publish an international research agenda each year on May 12.

The agenda should contain the research that we, the patient community, think needs to be done.

Regards,

Guido

www.meresearch.nl

 

[Firestormm]

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?

Morning Aileen,

I 'liked' your previous comment. This one though is perhaps asking the 'wrong' question? All too often these Facebook voting competitions assume that folk know about the organisation running in the competition and I don't think that they do - or if they do then that they 'agree' with that particular organisation either because they simply don't, or don't understand, or are perhaps misinformed.

If said organisation have an 'image problem' or are judged by some to be only about one issue or indeed are not in the same country - then the 'problem' is with that organisations image and not with the competition. Same goes I suppose for these petitions one sees about the place (although they may not have been well conceived in their entirety).

Then of course there is the simple fact that people can't/don't want to get involved I suppose. Not easy is it?

 

[Firestormm]

Hi Guys,

I agree our orgs have not been effective. This is basically because CAA does not represent patients and has not held CDC and NIH enough to account. We need to get uppity and cause a scene like the AIDS patients did.

I feel that we need a real org that will lobby hard for all the needed change and that this would be our biggest bang for the buck by far (rather than directly funding research). I am slowly going in that direction with my ME law and policy center, but very slowly as i am sick like all of you.

once an org gets itself set up and a little cred, the most important thing I think is seeking out grants from orgs outside of the ME world because they are the greatest source of money and also because a dollar out of the pocket of an ME patient is a dollar that that patient could have used for medical care, etc. CAA is very successful at getting grants; these grants then allow for healthy employees to do the work (and in CAA's case allow for huge salaries for Kim McCleary, Suzanne Vernon and their accountant).

i encourage people not to donate or 'join' CAA as they are counterproductive. I think a good way to have influence is for us to join our local/state orgs and then be the person who reps that org to the coalition4mecfs. I am uncomfortable with Cort having so much influence with that org. More patients joining would make for a better perspective for that org.

You could also join IMEA. It seems, from what i have heard, that PANDORA basically is the Marly Silverman show. If you agree with her then great, work together. I don't entirely agree with her; i think she should take a harder line with CDC and NIH; so I haven't joined.

Morning,

One 'problem' Justin is that NO organisation represents any 'community' other than its' membership. And yet we see quotes being given that seek to do just that. We also see people seemingly happy to promote their own opinions as being representative of the 'many' or 'most' in said 'community' when they bloody well are not.

I personally cannot stand it when I read of people stating things on my behalf assuming that I agree with them. And that especially goes for 'organisations' that amount to nothing more a group of friends getting together on the internet and banging on about their own personal views as if they were somehow credible scientists and/or medical professionals - but who do so anonymously.

Any organisation must surely be transparent and accountable. It should contain a membership who are eligible for a vote (at the very least). Existing charities do not have the support one would expect from such a HUGE number of patients diagnosed and/or affected by this condition. And yet if they did (and members had voting rights and the freedom to express their views and have them listened too) we might have some bargaining power and be able to negotiate for fairer treatment.

And for some unknown reason 'we' seem to have an abundance of charities and supposed 'advocacy' groups. Why? Why can't the existing charities flipping merge or something? Seems to work for other conditions but I suspect because of the very nature of my condition and the controversies that surround it - too many people have too many views and 'ne'er' the twain shall meet'. So patients and/or those affected by this condition become reluctant (perhaps because of loyalty or a lack of knowledge) to join more than one organisation - especially perhaps those groups that promulgate only one view.

Just saying

 

[markmc20001]

Well I think Justin has it right. THe patients need an advocacy organization that is working for the patients, and where the board members and leaders are held accountable by votes from the patient community. The REAL patients, not the special interests. How to sort thru the real ones, and the rest will be tough though.

 

[Bob]

Hi, please could we keep this thread to the theme of 'positive' and 'constructive' ideas.
Talking about any negative issues surrounding existing patient infrastructure is the opposite of what I want this thread to be.

There's loads of really interesting thoughts and ideas on this thread... Keep them coming!

 

[Esther12]

The REAL patients

I suspect a lot of us have different ideas about who they are, and what they want.

My priority for advocacy is utterly unrealistic: to ensure that those who had lumped all CFS patients together and treated them as if they were deconditioned/afraid of activity/whatever, are no longer able to operate in positions of authority over us. I want a recognition of past mistakes, and a new start with new people who understand the importance of being honest with patients about what they know about CFS and their ability to treat it, and know that they will face disciplinary action if they do otherwise.

One useful thing we could all do is try to discourage other PWCs from things like this:

Sorry Professor, but patients know that the WPI and NCI discovered HGRVs. XMRV was the wrong name, although of the human gammaretroviruses they discovered some will have a xenotropic host range.

As all the negative papers, including the blood group, used assays that had only been shown capable of detecting VP62, which does not exist in nature, and not theses viruses, everything is explained. The WPI and NCI assays of course do not count in this instance as there was no Trizol used with the PBMCs and culture times that those assays do require was not given by the blood group. After all they were trying to protect the blood supply with a fast high throughput assay, not a reliable test for positives that takes times and it seems Trizol. The CFIDS Ass have less than 1% of patients as members in the US, so they cannot claim to represent patients on any scale and even now have claimed they are switching to research, but how can they when the definitions they use for the disease don't require any symptoms, signs, or more importantly objective measures. Most experienced ME scientists would also say this disease is not complicated at all. The WPI and NCI/Ruscetii are however making incredible steps forward, as their research has been confirmed by Lo et al. and Hanson. It is interesting that you mention Lipkin is now doing deep sequencing for XMRV, will that include the human gammaretroviruses the WPI and NCI discovered? However, this really puts Lipkin is a new light, as if he is doing his own research he now has a conflict of interest regarding the multi lab study. Really he should not be heading that up with this conflict and the Chronic fatigue initiative conflict of interest.

Your comments should be deleted because they don't contain a shred of truth. Your query "It is interesting that you mention Lipkin is now doing deep sequencing for XMRV, will that include the human ammaretroviruses the WPI and NCI discovered?" reveals that you don't understand the basis of deep sequencing. However I'm leaving the comment here so that others can see the misinformation that pervades discussion of CFS.

Some of the more aggressive and less well informed advocacy around XMRV has been unhelpful, and could mean that more legitimate patient concerns related to CFS will be treated less seriously.

CFS is really complicated, and I'm sure that I make mistakes and end up looking silly because of it too, but it's something we want to try to limit. I think that forums like these can be useful for thrashing out ideas and seeing if they stand up to criticism, but they can also end up reinforcing our own errors if we lack people willing to push us for evidence to support our claims, or defend the positions of those we are criticising. A big problem is that we're all really tired, and that makes it a lot more of a burden to engage in real and critical discussions with one another - we're all also rather personally involved.

My positive idea for advocacy: we should try to be more cautious about what we believe, and more careful in the way we present those beliefs.

(PS: I more than realise how bad I can be at this - sometimes it's fun to argue in a less than cautious manner, and make bold claims - but for CFS, especially when speaking to non-patients, I think it's a bad idea though).

 

[Esther12]

Can we keep this thread to the theme of 'positive' and 'constructive' ideas please?
Talking about the negative issues surrounding existing patient infrastructure is the opposite of what I want this thread to be.

Having typed my reply as you posted, I now realise my is almost entirely disheartening and negative. I apologise everyone.... forgive me!!

 

[Bob]

Having typed my reply as you posted, I now realise my is almost entirely disheartening and negative. I apologise everyone.... forgive me!!

You are forgiven Esther!
There is always the option to 'edit' posts, did you know?

 

[Tuha]

Hi, in my opinion the primary problem is the vast majority of the global ME and CFS population are cut off from advocacy by various factors. Some are too sick to use a computer or get real life support - so if they have carers its the carers who should join. I know some do.

Some may not be able to afford internet or even travel to local support groups.

Most however are hiding their CFS diagnosis, in my opinion. The number of people who I have met who admit to CFS but wont say so publicly dwarfs the number who I have met (not counting forums or CFS society meetings etc) who openly admit to CFS. Those who do claim CFS have recovered ... which makes me doubt the diagnosis. However, why is it that recovered patients admit to it and not the sick?

Someone who is hiding their diagnosis may not be open, may not search forums, and may not join a society. This means they are cut off.

Why do we hide? Firstly the issues that arise from being open about the illness are frustrating and exhausting. Then there is the stigma and misunderstanding factor - fatigue, really?, you don't look too tired, everyone gets tired, etc. Then there is the confusion about what is wrong with us and what we should do about it. The doctors are either confused or ill-informed for the most part, the number of doctors who understand this illness are low in number, and even those will admit we don't understand the cause or really know how to treat it.

The icing on the cake of course it the recent advice, especially by biopsychosocial advisors, that we should not become involved in support groups. This is of course reinforced, at least in attitude, by the old Wikipedia. The current Wikipedia entry is not as bad, but still not good. Wikipedia is likely to be the first place most newly diagnosed patients will go to.

Along with confusion and lack of information is dis-empowerment. We tend to trust authorities as we are too sick to fight until we realize of course that most of the authorities are wrong about our illness.

Finally there is the problem of diagnosis. Most with CFS or ME are probably not diagnosed yet, particularly in countries which do not recognize this problem. I just read something about how in Malta (? irrc) ME or CFS are not considered grounds for disability.

I have been wondering if in addition to finding research funding, the other main goal of advocacy should be reaching out and empowering all those who are not involved, helping them to join us in advancing our common interests. I know others have also expressed this view over the last several years. The question is: how do we reach out and contact the majority of patients?

Bye
Alex

PS On advocacy and outrage you might like to read:

http://johnherd.wordpress.com/2011/10/10/a-time-for-outrage/

I think this is also our problem. we always start all these discussions with some excuses why its not possible. We can hear everywhere that we cannot do effective advocacy because the people are too sick, they are not diagnosed,.....even the patients are touched that you force them to do something because they are too sick to do it. I think we should stop it, noone is expecting that the sickest will join, they are too weak we can understand it, we are on the same boat and we will do it also for them. But this is not our main problem. our main problem is that we are not able to reach the patients who are able to do some advocacy, some of them would join the actions immediatelly but we are not able to inform them - and there is huge amount of these patients who are able to do it.

Let me do a small mathematic. I think an effective advocacy you can already do with 10 000 patients (even less). We have a statistic that there are 17 mil people sick. even if we will count all the aspect like some patients are too sick, some are not diagnosed,...to get these 10 000 shouldnt be a problem. these 10 000 patients is only 0,06 %. So it means we need to get 1 patients from 1700 - is it unrealistic? I dont think so. There can be even multiplication effect. For example if we will see that there will be a movement and advocacy action with a lot of support we can also ask our friends and family to join it. Me, personally I am sure that I would find at least 10 people from my side who would join almost all actions. But now if i see an action I dont annoy them (except internet contests) because I see that the general support is really small.
I personally know 10 patients - its not a huge number so maybe it will not be 100 % relevant. But from these patients 9 would be able to join all easy actions. 5-7 would be able to join more difficult actions like demonstrations if it will be good organise. 9 patients would be able to support financially ME/CFS research/activities.

So how already alex said our biggest problem is: how do we reach out and contact the majority of patients?
You know, I am happy to see this discussion but I already saw a lot of similar discussions but I am affraid that it will finish like always - talking for hours/days without taking any action/solution to solve it. we already know our main problems - we dont need to talk about them more and more - we need to talk about how to solve them and if we will find a soultion then to start to work on it immediatelly.

So if you agree lets turn this discussion how to reach a lot of patients and how to have an effective communication. if we will have enough people then we can easily solve other problems like to find better organisations/representats if necessary who will represent us,......

 

[Esther12]

There is always the option to 'edit' posts, did you know?

It took me ages to find the words for that... it would have broken my heart to delete it.

How about some sort of 'CAMPAIGN FOR HONESTY IN CFS'. No-one can be anti-honesty can they? Not openly anyway. Is that something everyone could unite around? Is that something we could use to encourage other patients to get invovled with, as Tuha suggests?

 

[Sam Carter]

I'd like to see a website launched where researchers could list their current/proposed ME-related areas of research and which would allow patients/supporters to make financial contributions to the ones they believe have most promise.

The main advantages of such a site are that, if set up properly and run transparently, it would allow targeted donations and encourage a large number of people to donate something, however small.

It could also be used to fund specific advocacy projects such as the recent XMRV ad organised by the MCWPA.

TL;DR let's find a way to bypass the main ME/CFS orgs and make it easy to give money to the best scientists / advocacy projects.

 

[leela]

My priority for advocacy is utterly unrealistic: to ensure that those who had lumped all CFS patients together and treated them as if they were deconditioned/afraid of activity/whatever, are no longer able to operate in positions of authority over us. I want a recognition of past mistakes, and a new start with new people who understand the importance of being honest with patients about what they know about CFS and their ability to treat it, and know that they will face disciplinary action if they do otherwise.

Esther, this is not negative at all! In fact, i don't think it' even unrealistic in the sense that it is just, and true, and needed. Just because we have become "conditioned" (haha) to believe that such a wonderful outcome is impossible, does not mean that it is. We all need to keep these "impossible dreams" in our minds and hearts, because if we give them none of our energy and attention, defeating them before we've begun--well, they *will* remain impossible.

I doubt anyone thought Ghandi's goals were "realistic" when he first talked about taking India back.

 

[Nielk]

For some reason, this group of CFS patients and maybe it's any illness, are very hard to move to action.
Right now, we have three charity contests going and we are pleading daily on this forum of people who do have a computer in their hands already, yet very few take the two minutes to vote for them. Why is that? Maybe someone can explain to me what I'm missing here? Why would anyone NOT chose to vote to help their fellow patients??????

 

[Boule de feu]

I've heard Annette W. say that in one hour they had made $65,000.
Just because patients were voting for them...
It was that easy.

 

[Nielk]

If she was talking about the Chase or Vivent charity contests, it took very hard work for weeks and weeks to keep reminding people to vote. We even had to fight cheaters and it certainly was not a one hour affair.

 

[Boule de feu]

If she was talking about the Chase or Vivent charity contests, it took very hard work for weeks and weeks to keep reminding people to vote. We even had to fight cheaters and it certainly was not a one hour affair.

By easy, I meant I did not have to get out of the house or send a big cheque...
I was able to contribute while sitting in my bed just by pushing a mouse button.

 

[alex3619]

I'd like to see a website launched where researchers could list their current/proposed ME-related areas of research and which would allow patients/supporters to make financial contributions to the ones they believe have most promise.

The main advantages of such a site are that, if set up properly and run transparently, it would allow targeted donations and encourage a large number of people to donate something, however small.

It could also be used to fund specific advocacy projects such as the recent XMRV ad organised by the MCWPA.

TL;DR let's find a way to bypass the main ME/CFS orgs and make it easy to give money to the best scientists / advocacy projects.

Hi Sam, I like this idea, but I am wondering if something like the IACFSME is not the best place to host it? The IACFSME has lots of researchers and doctors as members and their own website. Maybe we should approach them? Bye, Alex

 

[Tuha]

For some reason, this group of CFS patients and maybe it's any illness, are very hard to move to action.
Right now, we have three charity contests going and we are pleading daily on this forum of people who do have a computer in their hands already, yet very few take the two minutes to vote for them. Why is that? Maybe someone can explain to me what I'm missing here? Why would anyone NOT chose to vote to help their fellow patients??????

its the same problem like with other advocacy activities. we dont have a good system to contact the other patients. yes, we put some threads on this forum in advocacy section but who reads it? you can see that these threads were read some hundreds times but i think its all the time the same 50 persons or even less. I read these threads several times, maybe 20 and it always counts. so this system to inform the patients is not efficace, it can be part of the system but not the only one. We need another better system how to contact fast and efficace other patients (with being sure that they will read it) not only for these contest but all kinds of advocacy.
I will repeat myself- This is our key problem!!!