Article: The Blame Game: A Way Forward?

You can view the page at http://forums.phoenixrising.me/content.php?532-The-Blame-Game-A-Way-Forward

 

Hi kaffiend, I have read a lot of Bertrand Russell over the years. He is often worth reading. Bye, Alex

 

In reply to Christopher, post 14:

Hi Christopher, I think you are right in that we cannot blame patients. Our limitations are what they are. This does not mean we cannot explore ways to improve the situation, but the real test is whether or not they work - can they be used by our community effectively?

You missed a website. The first place most people look. The Wikipedia. What does that fount of wisdom tell us - essentially that we are all crazy, though they dress it up in fancy words. The vast majority of research, and in particularly biomedical research on ME and CFS, are simply ignored or dismissed in the Wikipedia. When the Wikipedia entry finally represents the current state of research and opinion on ME and CFS rather than being dominated by one limited school of thought, then the internet will be more ME friendly.

There is also this: there are upwards of 4000 members on PR I think, and maybe 2000 active advocates world-wide ... out of 17 million (the oft quoted figure) to 28 million patients (my estimate). These figures do not take into account the numbers (perhaps ten times as many) who simply use the net for investigation but do not register. So maybe there are 60,000 people using the net in this way. So this is 0.21% to 0.35% of the global community in advocacy and PR. I have no way of estimating how many are using other resources, but it probably isnt a whole lot more. So maybe 1-2% of us are on the net, are using net-based resources. Now this is distorted by the fact that most will be in third world countries. It is further distorted because many of us cannot use a computer due to neurological issues. Finally we have the problem that many of us are dirt poor - those who can even own a computer and internet connection are not the poorest members of our community.

If you use a figure of 2,000,000 patients, representing the USA and Europe primarily, the percentage rises to 3%. This is better but not much better. My fudge factor for guestimating how many are using the net is maybe 10%. Does anyone have data on search engine queries or whatever to give us a better figure?

So the question that comes up from time to time: how do we reach out to the rest? The second question is: how do we motivate some of them to do more to improve our situation globally?

I agree that if the phase 3 clinical trials of Rituximab for CCC ME/CFS work out as expected then a major focus of advocacy, if not the main focus of advocacy, should be to promote these results, and action based on these results. In the meantime I think we can do more to advocate for Rituximab trials where and when we think they can be made to happen. One of the things I like about the Rituximab research is it has the potential to fulfil both of my primary agendas at the same time: give us good ME research, and debunk bad ME research.

Bye, Alex

All I can speak to is the US and.... If you're talking about people taking the time to lobby their congressmen/senators on a regular basis - which is where the money is and research funding is the crucial need in this disorder - I'd say there's maybe 5 or 10 (and I'm not one of them).

There is no advocacy movement per se in ME/CFS - no strategic plan - instead there's a very small group of people (Marly Silverman, Bob Miller, etc.) that occasionally attempt the troops to get involved. There are people who are willing to call into CFSAC and provide their experiences but they are most preaching to the choir. That's obviously not effective since people have been doing that for years with no effect. There is almost no work done to put pressure on the bureacrats that hold the purse strings to supply more money for CFS.

The CAA always got alot of hits for what they didn't accomplish up on Capitol Hill but what many people missed is that they were literally just about the only ones there. I've lobbied up there and believe me, the Senators and Congressman know nothing about this disorder - they don't have the time - and they are not going to respond unless they have an active constituency pushing them. Without an organized effort to contact officials, give them actionable items to work on and then continued efforts to keep it in front of them, nothing is going to happen.

That takes alot of work! There's alot of angst in the CFS community about how poorly we've been treated - and I am there with everybody else complaining about that - but that hasn't translated into taking the action needed to change it for whatever reason, lack of energy, lack of hope, lack of promise.....My fear is that you could spend alot of money (as the CAA did with their lobbyist) and time and effort and still see no results - that makes me hesitant.

Most people do not have the time, energy or interest to immerse themselves in learning how to make a difference on the federal level. I think, on the other hand, groups are much more active in the UK - probably because the environment is so much more hostile there.

I think that you're right, though, Alex that reaching out to the rest of community that's online - it must be a majority of people with CFS in the US - and getting them engaged is critical. Dan Moricoli has a plan to do this - he actually has a background in this - but its costs money to find them and his site, like this one, is run on a shoestring.....It's tough to get started!

(By the way, there are 4,000 members of the Forum but there are only about 6 or 700 active ones - and the definition of active is pretty loose. We can cut out at least a 1,000 who have not visited the Forums or posted in over a year. (I've never been able to figure out where those $1,000,000 people with CFS are ))

Ideas - I would take small goals first - create a team to monitor and edit the Wikipedia site. Once that's in hand move onto other articles and papers. We should have a rapid response team to respond to negative media articles - although they are less and less. A small team could focus on research paper accuracy. It does take quite a bit of work, however, to understand the literature. Ultimately we should have a team that provides interpretations of new studies to media figures to try and get them into the press.

Our biggest need is to get more research funding but that will take more work. I can see creating a video that makes the patient community aware of the problem but first we probably need to expand the online community since that kind of advocacy appeals to only a few.

I can see starting a movement that focuses on how underserved the branch of women's disorders that includes FM, CFS, IBS is....All these disorders effect many women, cause high rates of distress, and are grossly underfunded. That seems like a women's issue waiting to happen. The CAA did engage with a group of non-profits to begin that but then the funding dropped out and that collapses (that's what I heard).

Not to make an excuse but we should acknowledge that its tough to do this stuff when you have CFS because of cognitive issues. I believe there's a tendency to ADHD in this disorder and that's being documented in FM right now. I certainly recognize it in myself and my tendency to rush all over the place (frantically ) rather than taking the time to create a strategic plan...

On the other hand the CFS community has tremendous needs and all glory to anyone to who makes the commitment to take them on. Nobody who's every done anything great ever felt they were capable of doing them - before they did them.

 

I think that besides all the reasons that Cort just mentioned, why we as a community find it so hard to do any advocacy and work on awareness, there is I feel a large feeling of apathy. Apathy, not because people don't care but, because they feel that whatever we do or have done in the past, we have been hit by a brick wall.
I remember this past November when the CFSAC took place and i was working on my phone testimony, I reached out to some people here privately asking them to do the same and the reply across the board was that "it will not make a difference anyway". I can't really fault them because from past experiences, it didn't seem like we got anywhere with these meetings. Although, I don't remember who but, someone on the panel said that they were most touched and affected by the patients' testimonies. It really gave them a feeling of how severe and limiting this illness is. Will this translate into any action? I don't know but, nothing will happen if we don't try.

As far as lobbying our congress and government. For most patients, it is too hard of a task to write up their own letters but if someone would write up a template that people can use by just adding some personal information, I think this would be a good idea. We could each for example send out these letters, once a week to each of our representatives in the government.

Where is the feedback from our own President (USA)? He promised Bob to look into it and of course there was no follow up and when recently there was a chance to repeat the question to the President by a White House forum where you can post questions to the president and the ones that get the most votes will be answered by the president live.
Bob's question was mysteriously "removed" from the list of questions! Where is our outcry about this?

The fact of the matter is that if WE don't make an effort at advocacy, no one will do it for us. I think our community needs to be shaken up a little to this fact.

I know Cort that you are trying to make excuses, saying we have cognitive issues, perhaps ADHD or just too weak to do anything about it but, when I read some of the posts here, I am so impressed with the intelligence and knowledge of many members. If we can just take this strength and use it in a positive, constructive and effective way- I'm sure we can accomplish something. Something is better than nothing.

 

(I've never been able to figure out where those $1,000,000 people with CFS are ))

Oh I think we're all million dollar people. Seriously though, they're definitely out there. The problem is that many CFS sufferers are basically housebound or pushed to the limit just to care for themselves.
Reading blogs like this just makes me more motivated: http://livingwithchronicfatiguesyndrome.wordpress.com/

But you make a good point, maybe we need a very basic 'stand up and get counted' type campaign?

 

Hi Cort, I agree with your points for the most part, and several have been discussed on PR before though I forget the context. We do indeed lack coherent strategic plans. A big part of that is numbers. Personally I would be happier to see PR grow ten or a hundred fold, and other sites to do the same. Then we would have a numbers base that can do things. I have been trying to promote PR and online actiivism, but for many its simply too hard. I get that. I used to be in that position too.

My comment on activists was more about those interested in activism, rather than those who are highly active. One of the oldest and most established information sources, Co-cure, as about 2000 members. This is where my baseline figure comes from. I think there probably are about 2000 promoting ME and CFS and related issues, its just we are scattered and have diverse approaches to doing it.

We do not have the numbers. With two million over Europe and North America we should have many more involved in advocacy. Its not just that we are sick. During my really bad years I could not even have read anything on PR, and posting would have been a dream .... and I am only a moderate patient. Severe patients have it hard. The less severe have more of a life as I said, so more responsibilities, it does not automatically translate to being able to do extra things. So I think its about public perception. How we perceive ourselves. This is reinforced by psychobabble, and negative public stereotypes of us. I think most of us believe it, at least for a time. This is a barrier we have to break in order to get good numbers. Most are not even looking for help. As a geek I cannot fathom this, but I am also biased by the fact that so many who are online are self selected to be the type who seek information or are computer literate. I see so many people looking for knowledge, but clearly the numbers do not show that most do this.

In order to function in advocacy with limited numbers, each of whom has limited capacity, I think we need to focus very carefully on targets. This makes strategy much more important for us than for most causes. Its one reason why I am talking about establishing a framework for taking on BPS/CBT/GET. We also need strategies for other elements of advocacy. Its all needed, and so few of us are capable of discussing strategy. I wish more of us used to be political lobbyists before we got ill. Any ex-politicians or public relations gurus out there?

Bye, Alex

 

But you make a good point, maybe we need a very basic 'stand up and get counted' type campaign?

How would we make such a campaign broadly appealing? What media would be used? How could we fund it? This is not meant to be difficult, I am asking if we can solve these questions, because I agree we need this.

My first thought is to run it initially as an online survey, but run small ads allover - definitely not just the internet. The survey would have links to information sources, plus a linking page to major and reliable websites ... obviously not wikipedia.

Bye, Alex

 

A small team could focus on research paper accuracy. It does take quite a bit of work, however, to understand the literature. Ultimately we should have a team that provides interpretations of new studies to media figures to try and get them into the press.

I'm just getting back to my own work and research full time this month but hope to have the energy for this type of project in the coming months. I have the background with a phd in experimental psychology/cognitive neuroscience to understand most of the core issues involved.

I'm also pissed off and therefore have a lot of fuel for the long game. Since the onset of my illness, I've had one recovery and relapse, so I need to be cautious about how much work I take on.

 

Our biggest need is to get more research funding but that will take more work. I can see creating a video that makes the patient community aware of the problem.

The video has already been created (http://www.youtube.com/watch?v=vIWGFFkp_lw).

Notice that our best reporters are turning their attention now to the issue of research funding. They are doing their part to make the public aware of the problem, and we need to capitalize on the shift. Here's how Llewellyn King framed the research funding issue in his first article on our behalf this year:

This scourge, this foul and stealthy confiscation of life, is so little understood that there's even confusion about its name.

In the United States, the disease is known as Chronic Fatigue Syndrome (CFS): a bland and trivializing nom de plume bestowed on the disease by the Centers for Disease Control in Atlanta. Elsewhere in the world, it's known as myalgic encephalomyelitis (ME). American patients tend to use both names and the acronym ME/CFS....

There is no known route to infection, no diagnoses and no cure. Research has been scattered and funded grudgingly at such low levels that Dr. Fred Volinsky of Boston has calculated annual federal funding for ME/CFS at only $1.25 per patient compared to $400 for multiple sclerosis....

There are parallels as well as dissimilarities to the early days of the AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is sloth....

A cure this year is unlikely, but better understanding can start today. Now.

Wanted: A high-energy, high-profile celebrity to do for ME/CFS what Elizabeth Taylor did for AIDS, what Jerry Lewis did for muscular dystrophy, and what Michael J. Fox is doing for Parkinsons: raising concern, raising money and banishing stigma. Fox has raised $264 million for Parkinsons. By contrast, the Chronic Fatigue Immune Deficiency Syndrome Association targeted raising just $2 million for research last year (http://open.salon.com/blog/llewellyn_king/2012/01/02/mecfs_into_2012_without_cure_or_care).

The article that David Tuller couldn't get published last year explored the research funding issue in the context of the CDC:

When it emerged in the late 1990s that the agency had been diverting funds designated for CFS to other programs and then lying to Congress about it, Dr. Reeveswho was in charge of the program while the financial irregularities were taking placesought and received whistle-blower protection.

Dr. Reeves also enraged the patient community by his refusal to consider changing the much-hated name of the diseasea name endorsed by the CDC in its 1988 paper and aggressively promoted in a public awareness campaign the agency launched in the mid-2000s. Patients say the name, like the term yuppie flu, reinforces stereotypes that they are a bunch of self-entitled whiners and malingerers....

It is not possible to exaggerate how much patients despise the name and believe it has hindered public understandingand how much they fault the CDC and Dr. Reeves for championing it....

Now, almost two years after Dr. Reeves departure, advocates and researchers say they have seen a shift in tonesome believe it is genuine, others notbut so far little change in substance....

Dr. Reeves departure...was a watershed event for patients and advocates, many of whom blame the agency for the prolonged lack of significant progress in CFS research. (They also blame years of inadequate funding from the National Institutes of Health, but thats another long story; it is worth noting, however, that the NIH online database of spending by disease category indicates only $4 to $6 million allocated annually for CFS in recent years, a small amount compared to other illnesses associated with similar levels of morbidity....)

In any event, the most promising research into the disease has been taking place not at the CDC or NIH but at academic medical centers; much of the new work is being funded by private donors who have family members with CFS....

With regards to the name of the illness, [Dr. Unger] wrote: Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward....

Reaction to Dr. Ungers efforts appears decidedly mixed so far. Yet some members of the research community express optimism about being able to develop, with Dr. Unger, the kind of cooperative framework that many felt was absent when Dr. Reeves ran the program (http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/).

This week David Tuller wrote of the research funding issue in the New York Times, referring there to both the NIH and the CDC:

Patients have long accused the mainstream medical and scientific community of neglect and abandonment. Many say that the C.D.C. has largely treated their disease as a psychological or stress-related condition....

The events of the past couple of years, though disheartening to chronic fatigue syndrome patients, may have a silver lining: Research into the disease, much of it privately financed, is ratcheting up.

A new research and treatment center has been created at Mount Sinai Hospital in New York. The Hutchins Family Foundation is investing $10 million in the Chronic Fatigue Initiative, an effort to find causes and treatments that has recruited top researchers from Columbia, Harvard, Duke and other institutions.

The disease had languished in the background at N.I.H. and C.D.C., and other scientists had not been paying much attention to it, said John Coffin, a professor of molecular biology at Tufts University. This has brought it back into attention (http://www.nytimes.com/2012/02/07/h...traction-is-far-and-wide.html?_r=1&ref=health).

When it comes to advocacy, we have long claimed that the belittling name given our illness has turned the tide against us. The task now is to shake off our learned helplessness and take advantage of the rising tide.

There is a tide in the affairs of men.
Which, taken at the flood, leads on to fortune;
Omitted, all the voyage of their life
Is bound in shallows and in miseries.
On such a full sea are we now afloat,
And we must take the current when it serves,
Or lose our ventures.

(Julius Caesar Act 4, scene 3)

 

Hi Ember, I agree. Taking advantage of existing trends, reinforcing them, is much easier than getting something off the ground that nobody has been paying any attention to - and especially easier for us with our limited capacity. Bye, Alex

 

How would we make such a campaign broadly appealing? What media would be used? How could we fund it? This is not meant to be difficult, I am asking if we can solve these questions, because I agree we need this.

My first thought is to run it initially as an online survey, but run small ads allover - definitely not just the internet. The survey would have links to information sources, plus a linking page to major and reliable websites ... obviously not wikipedia.

I don't have the answers either, but it is definitely something worth discussing.