Why are not more ME and CFS patients involved in advocacy?

[allyann]

I guess for me I don't have the energy for advocacy. I have been shouted down on this forum and on other mediums in the past for my thoughts or for posting information in the 'wrong' place.

Some advocates (who i believe only mean well) are so passionate that they refuse to listen to others point of view or belittle others who don't know as much as them.

I find for me I have enough battles without having to fight for my right to be heard in this community as well.

Allie



Sent from my iPod touch using Tapatalk

 

[taniaaust1]

I think many advocates end up giving up on it as one puts in so so much time and effort and it at this point of time has usually no results and one has been just advocating around in like circles... over and over..unheard.

That is how Im currently feeling.. Ive really worked my butt off as far as advocacy goes over the years at times.. but it never has had any results except when Im doing advocacy for the disabled rather then with just a focus on ME/CFS. I have had things Ive pushed for for disabled implimented .. people understand disability unfairness more then they understand ME/CFS unfairness etc.

Im currently not well enough to be doing ME/CFS advocacy and are using all my energy in my own fight to get the services I need (when that is something I really need an advocate myself for). I just hope that when I win the battle with various gov orgs. for the home support I need, it will help others who follow the same route.

 

[SilverbladeTE]

SQUEAKY WHEEL GETS THE GREASE!

nice nicey cup of tea attitude will not get us help
loud, annoying, pain in the arse protests etc WILL
see HIV/AIDS, nothing got done until they made a damn nuisance of themselves
stop thinking this ridiculous blinkered bullshit that "Oh those up top will help us if we behave like obedient quiet sheeple!"
they do not give a tinker's DAMN about us!

For every decent politician, there's one who simply is ignorant but would help, 3 who are useless wastes of space and 2 more who are rotten sons of bitches who'd sell their granny to the knackersyard never mind help us
And much of the media are carrion feasting abominations who glut only on hype and horror

Meh

One of the saddest examples of this was the mess in Northern Ireland, what many folk in AMerica didn't know, was there was more than one side, and the moderate majority on the various sides got sidelined by the minority of murderous evil scum terrorists and the futards who supported them
So, when the leader of the moderate Republicans (SDLP) asked a government figure, if they'd have used bombs and bullets would they have been listened to? the government person admitted, yes...
jeesh


I am not advocating terrorism, lol
no, it's merely sad fact as I keep alluding to, that way ALL Human society tends ot work is that it doesn't want to change, it doesn't want to hear, it doesn't want to improve
it's cosy in ignorance, in action, sloth, greed and never does anything until it's forced to, usually after some poor buggers have died horribly for no damn good reason (like say, car accident blackspots not being repaired etc)

I am actually a nice, gentle person who'd rather walk my dog, go fishing etc, it's jsut painful experience and illness that's made me a grumpy sod with no tolerance for "asshattery", and too many folk in the ME "sphere" don't want to rock the boat, admit that patience etc does NOT work, we'll all be bloody dead before the assholes in charge do anything!

petitions are generally (but not always) WORTHLESS, politicians wipe their arses on 'em as they hold no real weight or worth
Send 'em perosnal, but decent well crafted letters, meet them at "surgeries" and explain things, hold protests if ya can in public, out the ones who are scumbags in league with UNUM etc
pictures speak a thousand words, show folk what suffering is like.
etc

 

[Tristen]

My personal advocacy efforts are primarily about local impact. I prefer to educate local doctors, practitioners, media, and contacts. On the broader scale, I mostly just support those few researchers who trudge forward with an objective and philospophy I tend to agree with. I do support some political and educational advocacy actions, but avoid those making the most noise about how right they are and consequently contribute more to division than to cohesion within the patient community. This causes people like me to keep the advocacy focus to that which I feel is most productive.....and this often precludes some of the patient driven groups.

So to answer your question on the problem of a lack of involvement in the patient community..... I agree with almost everything that has been mentioned, especially that many are just too sick. But as far as for those who are able to suit up and show up, I see the problem mostly as just a lack of solidarity. There's too much disagreement on focus and methods. Too much division and hostility. This causes many who are too sick to work for solidairity, to just avoid the fray.

I agree with Hope that strength in numbers is more productive that being an independant advocate. I think the problem and solution lies within the issue of solidarity.

 

[Firestormm]

That's another good consideration Tristen IMO. Local support and advocacy. I would again suggest that for many folk a local network is more important/more accessible to them and their efforts than anything on a larger scale which can be impersonal and perhaps more demanding.

You can I think see the 'fruits of your labour' more easily on a local level that perhaps you can on a national/international one. You can choose your fights - if you like - with better local knowledge and it can be very much more personal.

Have been thinking about this thread whilst resting. I am not a great one for 'social media' but recently (last year) I have noticed more 'campaigns' that only required 'a vote'. Simply voting might lend one to think they are doing what they can to support whatever the cause is in a way that requires little from them.

Of course 'effectiveness' has to be a consideration when any critique is brought to bare against existing charities and when judging success. How do you measure 'effectiveness' objectively? How do you judge? Criticising is easy-peasy and the existing charities are critiqued it would seem every single day; but are those critiques, 'fair' and 'reasonable'?

One of my own bug-bears with charities (generally) is an apparent lack of accountability. If a Chief Exec for example is paid a 'huge' salary, how is one to know that as a member I am getting 'value for money'? There seems to be a quirkiness about charities in the UK. They have become (the bigger ones) in many respects 'businesses' and are no longer run primarily on a voluntary basis.

But hey that's cool. I haven't got a problem with that. I myself am engaged with a regional neurological alliance and the effort required to function effectively (in my opinion) as say a Vice Chairman or something, is considerable. Yet I have noticed that several prominent UK charities (from all walks) do pay large salaries to their CEO's etc.

And so I think value for money has to play a factor in assessing 'effectiveness'. Charities also function on membership (allegedly) and I think (IMO) the 'quirkiness' and 'olde worlde' nature of charities, the image if you will; might be at odds with this business acumen. That members are not aware, not able, not bothered to express their collective voice in the same way that share holders might. But that's only an impression.

For 'advocates' involved in charity work - what is the measurable product? Unlike in business where you can invest X and produce Y, what is it that advocacy aims to produce that can be measured and used to judge effectiveness; used to hold those responsible to account so to speak? This was a really hard concept for me to 'sell' to the local neuro group I am involved with. Ideas and energy are great - but what's the business plan? What are the aims? Think of an advocacy organisation as a real business and it will at least help (if not be essential) for obtaining donations.

If one wants to force through change, or even to see change, that I think it is reasonable within a charity to come up with a better plan of achieving what one sees as ineffectiveness. I'm also reluctant to push for what I might see as a better way of doing it - if I myself cannot participate. I still have that feeling that if I can't help and get involved and see any recommendations I might make through to the end - then I shouldn't simply criticise because I don't like something.

Mind you, if I was able to work and work effectively, I'd get more involved than I feel able to at present. I would certainly have accepted the position offered recently. Then it all depends - I suppose - what you regard as 'advocacy'. I do my bit. To the best of my ability. And if anyone wants to judge me they can take a running jump

 

[Levi]

It would be nice if the world ME/CFS community could even agree about a place to start. A simple plan. IMHO, identification of patient subsets and biomarkers for those subsets should be the starting place. Not improving the definition(s). Not changing the name(s). Those efforts have failed for decades.

Want a starting patient subset and biomarker? How about CDC definition and antibodies to EBV? That will include a lot of people, sure. We will call that group ME/CFS1. Refine on that. Once we start that thought process into play, we will be on our way. We need to see that a "diagnosis of exclusion" in the wast majority of cases becomes a "diagnosis of nothing". Every diagnosis of ME/CFS should entail at least one biomarker.

 

[alex3619]

Hi Levi, I agree with you about biomarkers. Arguing about the name is a temporary fix, as once we have definitive biomarkers the name may change again anyway. Bye, Alex

 

[alex3619]

ISSUE TWO: The numbers game: why are there not enough advocates?

Most of the problems of ISSUE ONE are important here too. This especially applies to illness severity and financial pressures.


The Undiagnosed

The question has been raised about nondiagnosis of ME or CFS. I agree, but this is also probably due to misdiagnosis with other disorders. While some diagnosed with ME or CFS may have other disorders, the reverse is also true. If you don't know that you have ME or CFS then there is no reason to get involved in advocacy.


Disempowered, Demoralized, Confused, Misinformed

There are psychological factors as well. Confusion is possibly top of the list. We get conflicting accounts, conflicting theories, and conflicting advice. We follow medical advice, and either show no improvement or get worse. We have medical insurance, but we don't get proper support from insurance carriers. We are citizens, but our governments don't support us. This is not only confusing, its demoralizing. We are relegated to second class citizens. We are labelled with perjoratives based on ignorance not fact, such as being labelled malingerers. This adds to the stigma of the condition which is broader than the claim we have a psychiatric illness.

We have been labelled the undeserving sick by some in the medical profession. At no point is this justified, its just asserted either directly or indirectly. On the one hand the CBT/GET proponents acknowledge we have a real illness, with real physical symptoms, and on the other hand its all our fault according to the common rhetoric. They want to stand on both sides of the argument. Yes, its a physical ailment but the cause is mental. Yes we are sick, but its our fault.

These attitudes and misinformation contribute to our confusion and demoralization. Demoralized and confused, we are disempowered. I suspect many of us simply don't want to advocate for better treatment - we have been silenced by the propaganda machine.

To compound this the large number of patients who engage in CBT/GET and who get worse are told things like "we can't help you further" or "you didn't try hard enough". So we are abandoned or blamed. It never occurs to them that the treatments they offer are woefully inadequate. They do not admit failure.

Add to this the recent rise in anti-disabled rhetoric, and its easy to see why we don't want to be visible. Confused, demoralized, afraid and disempowered, it is hard to embrace advocacy.


Isolated and Unaware

We are isolated in several senses of the word. Physically many of us are house or bed bound. Those who are not have had to reduce their life - rather than total isolation, they live in partial isolation.

We are also isolated from information. The medical community and the media are the main gatekeepers to information on our disorder. Most in the medical community are so out of date on ME and CFS issues that their opinions could be described as antiquated - so we are kept from good medical knowledge. The media very rarely does serious investigation into stories on ME or CFS.

Because we cannot travel, and we cannot endure prolonged activity, creating and maintaining advocacy groups is difficult. We are probably most effective online, but online advocacy is only one part of advocacy.

We are not just unaware of the medical issues, and the latest biomedical research, we are unaware of the need to learn such things. If you don't know the information is out there, and you are not driven to look for it, there is a risk you wont find anything.

The wikipedia reinforces these things. The wikipedia article on CFS is so distorted that it invites patients to simply accept their lot. Only those who are computer literate or know other patients who are, or are determined to find answers, find sites like this one. Since the Wikipedia is often the first place people go to for information, it becomes the first place they are misinformed.


Acceptance of Dogmatic Authority

Too many of us start out accepting claims from authority. It took me a long time to learn to reject those claims when they were not founded in fact or reason. We trust doctors, its a culturally reinforced attitude. Over time we learn that trust is often unfounded, but that means a huge delay in coming to the realization that advocacy is necessary.


Social Support

A lot who get into advocacy are in local support networks. They are there to support patients. Its a good goal, and very much needed, but it does nothing to correct the problem. It does little to bring successful treatments closer to patients. Yet this is not the main problem with support groups. The problem is that many of them are not even aware of the issues. Some of the stories about support groups I hear are distressing - I have no way of knowing if these are isolated incidents are part of a wider problem. To my way of thinking support groups ought to be at least educating themselves on advocacy needs ... but where do they go?


The Internet

In the last decade and a half the internet has risen to become a major information source. Now at least we have many places to go for information. However that information reflects the interest, attitudes and knowledge of the groups that contribute to the site. So the CDC might give very different information to the Wikipedia, which is different to Phoenix Rising. This adds to confusion. Many probably stop after reading Wikipedia, thinking that it must be correct, particularly if the same information is being supplied by their own doctors.


What Kind of Advocacy?

If someone does get into advocacy, what kind do they do? Fund raising? Research support? Political lobbying? Human rights issues? There are many things that need doing, and so very few to do them. Our efforts are divided and occasionally at cross purposes.


Other Group's Strategies

Not having enough advocates means using strategies designed for HIV AIDS or MS are likely to fail. We don't have their numbers, and each of those few can do far less then many in the other advocacy movements. That does not mean we can't learn from other advocacy groups, it means we cannot just cut and paste their methods to our situation. If we want to use their strategies, we first have to massively increase the number of advocates, and that is not an easy thing to do.


Leadership

We also don't lack leaders. We have plenty of people who can lead. What we lack is healthy leaders who have a clear sense of strategy, a vision, that is effective and acceptable to the majority of patients. They also need to be committed to helping us. Very few healthy people are that committed and have the time and resources to help. This is a major problem for us as most of us have major cognitive issues not just physical issues. How can a leader be effective when they are housebound, bedbound, or only functioning occasionally? Could you imagine a major corporation working effectively if the CEO was only there a few days a month?


ISSUE THREE is pending ...

 

[Astrea]

We are trying to help gather as many people to go to Washington D.C. this May!

Hey everyone! Lizzie Fall and Sarah Whitestone (age 17) both have ME/CFS have started a Pay It Forward for ME Pledge campaign to help Speak Up About ME have more younger people make a presentation in Washington, D.C. at the Chronic Fatigue Advisory Meeting in May 2012.

We are asking you with whether you have ME/CFS or not to take part. Its called the Pay It Forward for ME 10 dollar pledge. All donations are tax deductible and go straight through Speak Up About ME to Pandora and Phoenix Rising (Large Non Profit Advocacy Groups) to defray costs of those attending and possibly help more people attend.

They are doing their part to Pay it Forward for ME. The site is in progress and they will be listing more blogs and some resources. Lizzie also has a special report coming up that will be very interesting.

Hey and if you are in the UK, Europe, South America, Africa or Australiasupport us and we will support you. The tax deductible donation is only 10 dollars and Pay Pal does the exchange rate math. Its a win win! Thanks!

Heres the information:

http://payitforwardforme.tumblr.com/

https://twitter.com/PayitFoward4ME

http://www.facebook.com/groups/payitforwardforme/

 

[Astrea]

They want to start at changing the name to ME and making them ...

accountable for their action..President Obama and Kathleen Sebelius. It's an ambitious start but these girls are bright and beautiful and won't stop till they get answers.

Please support the Pay It Forward For Me Pledge Campaign...just asking everyone to chip in 10 bucks.

Simple.

Thanks,

Astrea

 

[Nielk]

Thanks Astrea,

Here is an opportunity to convert "talking" into "doing".

 

[ukxmrv]

Allyann,

If you are serious about advocacy then just organise something yourself. Don't pay attention to what people say in forums. Find PWME and CFS who have done actual concrete things (plenty of these about) and offer your services to help them when needed.

This is too important to be put off by a few people on the internet. It should not be about bowing to their egos but what you can actually do to make a difference. Good luck.

 

[Kati]

I agree with UKXMRV.

We cannot wait for others to organize things, because we may wait for a long time. It is so easy to get complacent.
I also agree with not paying attention to the critics on the forums.

 

[GcMAF Australia]

I have provided an Australian NZ group http://forums.phoenixrising.me/inde...d-new-zealand-treatment-group.28/group-detail
and Advocacy at the 25th-28th Nov at the Adelaide Convention Centre (right in the city) is the 6th Australian Health and Medical Congress. http://www.ahmrcongress.org.au/
To me this is the start of action.

 

[Firestormm]

I think you also need to consider who you are advocating for exactly and how you are going to ensure that what you see as a priority for action is something shared by the majority of those you are representing. And this can be hard.

It is a failing I think to establish a small group of 'advocates' and 'advocate' for something that only those in that group think is important or even correct. All too often - though perhaps to a lesser extent more recently - I have seen as you all have I suppose, claims to reflect the majority view or to speak for the 'many'.

Another thing that I think does very little for 'advocacy' organisations is anonymity. If people cannot see who is saying what, then they will be less trusting. This goes some way towards the accountability I was talking of earlier. If you establish an organisation then with that comes responsibility particularly is money is involved but also if you start making claims such as those of representation or medical/scientific knowledge.

 

[Tito]

To me, an example of successful advocacy was HIV/Aids end of the eighties and during the nineties. Advocacy really started with the discovery of the virus, not before. Before, patients were stigmatised as being ill due to the 'stress of being gay' etc. Once the virus was identified, they had a plan: information about routes of contamination, prevention, research for a vaccine. Because patients could work until the final stage of the illness, they took advantage of their position as journalists, actors, politicians, ... to obtain funding and media coverage for example. It is to be remembered that gay men in the US are quite a powerful economic group with time to climb the career ladder and no children to spend money on. Additionally, they dragged their fight into the political arena to put an end to discrimination. And it works with phenomenal money being invested in research, prevention, etc. Then in the 2000s, medical research started to stagnate. They could not stop that virus or find a vaccine. And a new dissident voice started to appear that HIV would not cause Aids. People would get better by changing their diets, etc. And now what was once successful advocacy is practically silent.

In our case, as mentioned above, the confusion regarding the cause still remains, hence no concerted plan to put together in terms of funding, prevention, treatments. Practically the majority of people diagnosed with ME are incapable of working, hence the loss of our professional position to educate, inform, convince society to do something about it. We also have no common political agenda unlike HIV patients who were almost exclusively young gay men badly discriminated. The only thing similar to the HIV situation is the dissenting voices of the 2000s when Aids advocacy slowly disappeared. We are in this position with people talking about their diet changing their life, etc.

We are also the victims of a new phenomena that was not present so much in the 80s: the dogma of positive thinking that has completely swallowed the Americam society and a significant part of Europe.

This is my view about ME advocacy. And don't ask me what to do next...

 

[heapsreal]

I dont do any advoc due to possible discrimination etc from work. My sick leave is/was somewhat high and previous experience mentioning fatigue was a nightmare to go through, plus lose of wages etc and a lovely diagnosis of depression??? So because of the stigma, in the real i dont mention cfs/me, not many know. If i was not working then i would possibly do more but then cfs/me would probably hold me back.

cheers!!!

 

[GcMAF Australia]

Sorry I may have omitted a thread for the Adelaide Demonstration
http://forums.phoenixrising.me/inde...demonstration-in-australia.18662/#post-283913

 

[WillowJ]

I dont do any advoc due to possible discrimination etc from work. My sick leave is/was somewhat high and previous experience mentioning fatigue was a nightmare to go through, plus lose of wages etc and a lovely diagnosis of depression??? So because of the stigma, in the real i dont mention cfs/me, not many know. If i was not working then i would possibly do more but then cfs/me would probably hold me back.

cheers!!!

that's quite rational. your family comes first! all the best

 

[taniaaust1]

To me, an example of successful advocacy was HIV/Aids end of the eighties and during the nineties. Advocacy really started with the discovery of the virus, not before. Before, patients were stigmatised as being ill due to the 'stress of being gay' etc. Once the virus was identified, they had a plan: information about routes of contamination, prevention, research for a vaccine. Because patients could work until the final stage of the illness, they took advantage of their position as journalists, actors, politicians, ... to obtain funding and media coverage for example. It is to be remembered that gay men in the US are quite a powerful economic group with time to climb the career ladder and no children to spend money on. Additionally, they dragged their fight into the political arena to put an end to discrimination. And it works with phenomenal money being invested in research, prevention, etc. Then in the 2000s, medical research started to stagnate. They could not stop that virus or find a vaccine. And a new dissident voice started to appear that HIV would not cause Aids. People would get better by changing their diets, etc. And now what was once successful advocacy is practically silent.

In our case, as mentioned above, the confusion regarding the cause still remains, hence no concerted plan to put together in terms of funding, prevention, treatments. Practically the majority of people diagnosed with ME are incapable of working, hence the loss of our professional position to educate, inform, convince society to do something about it. We also have no common political agenda unlike HIV patients who were almost exclusively young gay men badly discriminated. The only thing similar to the HIV situation is the dissenting voices of the 2000s when Aids advocacy slowly disappeared. We are in this position with people talking about their diet changing their life, etc.

We are also the victims of a new phenomena that was not present so much in the 80s: the dogma of positive thinking that has completely swallowed the Americam society and a significant part of Europe.

This is my view about ME advocacy. And don't ask me what to do next...

Not only that.. their advocacy was also driven by fear of death.. that must of been a very strong motivator to be geting money for research etc. With all the differences between AIDS and us.. we can never expect for our advocacy to be as powerful as what it was with AIDS. (unless it turns out ME is proven to be contagious and affecting people.. if that was proven.. yeah well then we'd have a better chance of getting good advocacy.