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

This question is raised frequently. We have tens of millions ill worldwide, but only a few thousand are involved in advocacy, and probably no more than a few hundred are highly involved. This is for an illness for which services and treatments are often dismal or unaffordable. So why are more of us not involved? I will post my own thoughts on this later. It does not have simple answers. This is in response to some posts including this one (post 25):

http://forums.phoenixrising.me/show...acy-Brainstorming-The-Thread-on-Threads/page3

I was involved.

I cant get involved now because I can see the way the ME charities are being manipulated by vested interests.

I was taken for a ride for twenty years and I am angry about the time and effort wasted.

We will not be treated fairly until other sufferers from diseases that have possible links to causes that the medical industry want to hide are also treated fairly, such as autism and Gulf War.

Advocating for one disease is not enough. The political problem is so much wider and all-pervasive.

Lots of reasons.

A major one I think is that people don't know they have ME/CFS because they aren't given the diagnosis and go for years undiagnosed or think they have something else. If they don't know what they have (or might have), they won't know what group to join/ participate; what actions to take, etc.

Second: Pareto's Law -- which doesn't only apply to ME/CFS but many other things -- 20% of the people do 80% of the work.

Third: Instant gratification -- again, not just ME/CFS -- most people think short-term and not long-term when looking for results. Obviously, we all wanted to get well yesterday but, like many things, it may take a while to find the answers. Maybe if we all took 5 minutes every month to do something -- whether that be sign a petition, call your governmental representative, etc., we'd get somewhere. Mountains can be moved a teaspoonful at a time.

Fourth: Not entirely patients' faults and there have been good threads about research on this forum, but poor scientific literacy and how science works also contributes. People, understandably desperate, may waste time/ money/ effort chasing down tests, treatments, theories, etc. that have little or no scientific basis. When I say scientific literacy, I don't mean understanding and reading entire scientific articles, I mean having some sense of what the scientific process is, basic questions that should be asked of every study/ theory, etc. -- there are materials geared to the public for this.

http://www.sciencedaily.com/releases/2007/02/070218134322.htm

Fifth: Sense of urgency. If most people actually died or were in danger of dying of ME/CFS, they would react. But because it is chronic if persistent, they may not feel the need to act and act NOW. I also suspect most new or less knowledgeable people may not realize people have and do die of ME/CFS; certainly, healthcare providers do not and mainstream sources don't point this out. When I am able to participate in advocacy, I do it with the view that I am fighting for my life -- in that my life is passing me by while I am ill.

Sixth: Good enough, i.e. I don't have to agree with 100% of a group's views to support it. Certainly, there have been problems with a number of ME/CFS groups in terms of their affiliations, statements, views, etc. but if I feel that I can support 75% or more of their stances, I do so. That % and what it involves will vary from person to person of course. I believe in strength in numbers rather than being an independent advocate.

Also, a lot of issues of non-participation are probably general to advocacy and perhaps not specifically ME/CFS.

80% are undiagnosed. How can they advocate when they don't know what they have? Assuming this is the biggest ME/CFS forum in the world and as such, would be a center for advocacy, the three main countries I see on this forum are US, UK, and AUS.

US prevalence is 1 million, UK is 250k, AUS is 180k. Only 286,000 of these people are diagnosed.

Then you have to consider how many have or can afford a computer and internet access, and/or would be interested in information such as you would find here or would have the energy/concentration to come here. That brings it down to 5,201, which is the current number of members of this forum. Of those, only 768 are active members.

So from 17 million potential advocates down to 768. Once again the 768 would be divided down into who is interested in advocacy, who has the energy, knowledge and so forth.

If we could get the other 80% diagnosed, that would certainly enlarge the pool of potential advocates.

I would imagine a big part of it is that when we're really sick, many of us have huge problems with thinking and communicating clearly, and/or with anything stressful. And not even enough energy for basic survival some of the time.

And because many people don't get a full remission. So at every stage of the illness, people are stretched to their personal limits and feel like they're missing out on things they want in their lives. So making time for additional things is very difficult.

I tend to think the rest of the world doesn't fight for us because they don't truly understand how bad it is, because it's not known to be immediately fatal, and because they honestly don't even know we're here or have any idea how many people are affected. Most people I encounter have barely heard of the illness, and are shocked to find out how common it is.

I was always mystified about the numbers that are claimed to be ill. If it's true that 80% are not diagnosed and don't know they have it, how do we know they exist?

For me it is because of confusion. What do I advocate for? No one knows for sure what causes ME/CFS. What do I push for? Who do I give my money to? I don't like what has gone on with the CAA and the WPI has fallen through. Further, who do I advocate to-the CDC, the NIH? They act like we are nothing but an annoyance they want to go away. I write them letters and get the same standard response - we can't do that because we don't know if that is true or not or we lack the funding blah, blah,......

What do I do now?

I think most of us are so physically and emotionally exhausted by constantly having to fight just to be believed that we're ill, let alone basic human rights, that we can't handle fighting for other people as well. Plus some people have been so badly treated by medical services, social services and/or their families that they have literally become traumatised. There was one ME specialist, can't remember who but I think a woman, who was saying that a large proportion of her patients have PTSD from the way they've been treated.

From studies. We count a given population and see how many of a statistically representative sample with, for example Fukuda-International-CFS (not ME-ICC, but the International update to Fukuda) have already been diagnosed. Then we estimate that if only 10% (that is Jason's newest figure) of them had previously been diagnosed, probably only 10% of all CFS patients have been diagnosed.

So we take the CFS patients we know about and multiply by the appropriate figure to find the others (90% from the newest study; ~80% from the previous Jason study and from CDC estimates).

It is a very rough estimate, but it is the best we know how to do.

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

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

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

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

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

Could we start by doing more to celebrate the advocates among us already (http://forums.phoenixrising.me/showthread.php?16434-Please-sign-this-petition!)?

That's actually a good parameter, to see what percentage of active forum members will sign this petition.
I would be interested to hear from the members who chose not to - what their reason is?

It's good to talk through these issues. My experience Tuha, is that it is a miracle to find a group of ME people who can all work together. It's just as you described with long waits for communication. I work with others and understand that it may well for weeks before I get a response and sometimes month before a whole group can respond. It's the nature of the disease. Not only do we have the physical hurdles imposed but extra ones like trying to survive in appalling conditions.

My gut feeling is that the organisation you were trying to work with was either unreliable, didn't really like your project or things changed and or they moved onto other priorities. My advice would be to try again to find either a more reliable group or start your own group for a project. There are incredible PWME who do deliver on projects and I'd look out for them. That's how I have done things in the past, Look for people with shared goals and values who have delivered and initially just try to help them.

Most of the reliable PWME who can deliver a target do currently have a project that they are working on.

Good luck.

Issues for Advocates

ISSUE ONE: Are advocates doing enough?

The impression I get is most advocates are working to their limit, its just the limit is too small. The only way to improve advocacy with current advocate numbers is to work smarter - and that means having a plan.

As we get sicker, our life contracts, but we try to hold on to as much as we can. As a result we are often doing more than we can sustain, doing more is impossible without crashing, and even doing what we are leads to crashes. Once we are able to pace our activity or otherwise adapt to our illness, we still try to do as much as we can. There is not very much energy left for anything, and if we expend it on advocacy we are taking away from an already reduced life.

Illness Severity

Our local ME/CFS society dissolved because there was nobody well enough to keep it going. This is not an uncommon occurance either, I have heard of a number of other examples of this.

For the only mildly ill (using ICC ME criteria) we still have some kind of a life we can cling to. If we are working then we work, we rest, then we work again. There is not much left for advocacy. To a lesser extent this also applies to students.

The moderately ill may be working part-time, or may have been forced to stop. There is limited capacity to do much, and until they learn to pace themselves it is impossible to get the energy to do advocacy - otherwise its right into a push-crash cycle.

I am moderate on the ICC ME scale. I know that if I want to do more, then I have to do less somewhere else. As a result everything I do is a trade-off with doing something else.

Severe patients are struggling to survive. They have very little energy for anything else, and may have very limited time even on a computer while lying in bed. I know when my illness was more in the severe stage (for a year or two in the 90s) I could not even think about advocacy. Survival and healing were my only concerns.

Very severe patients probably can't use a computer. They cannot be expected to be in advocacy.


Finances

Advocacy costs money, just owning and running a computer costs money. So many of us are below the poverty line, struggling for basic survival. Do we have an internet account or do we spend the money on more medical tests, or another treatment? These are real issues for many of us.

The same argument holds for travelling for protests or testimonies or whatever.


Cognitive Issues

Advocacy is mentally difficult. Given we typically have multiple cognitive issues, including poor working memory and difficulty concentrating, the kind of mental focus needed for even online advocacy is difficult. It can require sufficient mental and emotional activity that it can induce a crash, even if minimal physical activity is involved. So mental activity has to be paced along with physical.

Cognitive inertia is also something I suffer with. I have trouble shifting tasks. If I have been doing one kind of thing for a while then I can cope, but if I have to do something else it is harder to switch back. This is one reason why I cannot do a little bit of something, then something else. Things need to be managed in blocks of activity. When I was working toward a PhD I found the point at which I began to realize I would have to quit my candidacy was when it was taking longer to get my brain into gear than my current mental endurance would sustain on a given day. By the time my brain started thinking it was time to quit.

I deal with these issue by four methods - two are resting and alternating activities. It is uncommon for me to be writing something as long as this post for very long, instead I will break it up into a number of sessions.

The third method is that I try to do most those things which I find easiest. This is a constraint on the types of activities I undertake. While I want to work at a wider variety of advocacy, only in some things do I have a capacity for sustained effort.

The fourth is by blocking activity. I will do one thing for a while, sometimes many days, then switch to another task. Sometimes I can get derailed by this - I have quite a few things I need or want to continue that are sitting in my todo list.


Limited Physical Capacity

Many of us cannot physically travel without it taking a large toll, often inducing a crash. If we have that issue then we might be able to travel for protests or whatever, but there will be costs - both financial and health payback.


Limited Sustained Energy and Attention

Related to pacing is the issue that often we try to do too much. So though we can start strong we have problems sustaining it. So advocacy suffers from a waxing and waning effect. The smaller the number of advocates doing some project, the larger the impact this will have on their advocacy.


Competing Pursuits

What dominates us for many years is the need to get better. We go looking for an answer, any answer. Our time, resources and energy are pursuing health, one way or another.

In my own case I stepped up my advocacy at the point when I had downgraded my efforts at healing. I had run out of money, but I could still try to promote research. While I had been involved in promoting research for a long time, my efforts at political advocacy are comparatively recent.


Lack of Focus and Coordination

What we lack however is focus on critical issues (we are mostly doing our own thing) and coordinating our activity with other advocates. Advocacy groups probably have a little more coordination, but there is not enough of that to make a difference. In addition advocacy groups tend to get caught up in their own agenda, they may have some success on some things, but they cannot do everything.

One of the reasons why I want to promote discussion on advocacy is to try to highlight what activities are most needed. If we can get a better sense of strategy, then we will have a better idea on what tactics to employ to achieve our goals. If we don't know what to aim for we risk wasting our limited effort.


Summation on Advocacy

My impression is that advocates are generally doing a lot, sometimes too much as it comes at a health cost. There are simply not enough advocates. We also lack a coherent strategy.


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

Thankyou to Alex for your very comprehensive post.

One thing we could focus more on is identifying and exploiting the skills that we have as a group.

A few examples to show what I mean:

Several people seem to have science backgrounds and are excellent at writing letters and responses to poor quality research. I think this area is going well.

I think Justin Reilly is on the right lines (using his legal training) trying to set up a legal 'force' to try and exert pressure through that channel. I really wish we had more lawyers identified so that we could have positive impact on disability rights (hate speech) and benefit entitlements

My training is in project management. I LIKE planning and co-ordination, but I am not the person to contribute to science, legal or strategy work, except in a very humble capacity eg proof reading.

OTH

Good question Alex. I have thought about this over the decades. It is my belief that a major cause of ineffective advocacy is that for whatever reason, ME/CFS patients do not get along very well with each other and can never coordinate efforts effectively.

Another factor is that there are no generally accepted biomarkers or tests for ME/CFS. So it is mainly based on a patients say-so that they are ill. Which automatically puts the patients that believe they are suffering from a biomedical illness into a defensive posture and validity vacuum. And of course it mixes all sorts of non-homogenous patients together into what is perceived by the medical orthodoxy as a bogus "wastebasket" diagnosis.

Most patients put in that position just want to stay under the radar and hope for the best. Heck, maybe someone by accident will stumble onto a cure or major development in ME/CFS while researching some other disease or something . . .

Hi Levi, there are many ideas as to what is wrong with us, and many different strategies for trying to deal with it. I have seen groups rise to back one treatment on very little grounds many times, only to fade away when the treatment is not proven to be effective. Due to the uncertainty, the diversity of theories, and the complete lack of credible authoratative advice from most in the medical profession, it is easy for us to divide into diverse groups. So I agree completely with the problems you raise.

The homegeneity in ME and CFS groups are a problem only if a particular subgroup insists they are right and lock out others. This effectively prevents communication. It may be that they are right for the subgroup, the treatment is effective, but that does not mean it is correct for others. This creates a barrier to cooperation.

This might also happen with diagnostic subgroups like Lyme disease, but to be honest I haven't seen it as a problem in those with Lyme. They often push CFS and ME patients to be tested, but I don't see this as a bad thing - testing for Lyme should be routine in many parts of the world. Those who are Lyme positive probably need different treatment to those who are Lyme negative.

Otherwise the heterogeneity shouldn't matter by itself - we all want a cure, we all want good research. So I suspect its about attitudes that some subgroups develop. Would anyone like to comment further?

I also agree that many seem to have the attitude that someone else will solve it, I mean thats what researchers, doctors and governments are for, right? I will write about this more in a while.

Bye, Alex

Define 'Advocacy' because I think (don't know) but my impression is that different 'advocates' are 'advocating' different things and may often be at crossed-purposes.

Back to the question (though the above is important I think) I would suggest that many feel they are being represented by others to a better extent than they are personally able.

Also, although membership of designated charities (UK) is relatively low I would imagine 'advocacy' is not everyone's (including my own) number one priority - managing my condition is. I would even go so far as to say that 'activism' or active advocacy is either beyond a patient's ability or is simply not on their radar.

There is also animosity out there and division and disagreement (dare I say 'infighting' and criticism) even perhaps among the charities of which there are too many (in my opinion) although there are signs of them working together. When it comes to say MS there is one main UK charity - with ME we have, what, six, seven? Why?

If 'advocacy' means in part 'raising awareness' then I think this aspect has been improving over recent years. ME is more 'out there' now and in the public eye. And yet, within the 'community' there remains for example - key disagreement over the definition of 'ME' and the label not to mention who has 'it' and who has the other.

I'd better read through all the thread properly now, but those were my first thoughts.

I can say it took me 25 years, who knows who many doctors, and loosing everything before I figured out I had it. And I grew up with a good supply of doctors one would hope. So it is not easy. I wouldn't be suprised at all if only one in 10 got a diagnosis.

One really needs money and resources(before going broke trying to get better) to even get a diagnosis with this disease. The average person is trying to figure out how to make rent, put food on the table, or punch a time clock. Forget having time and money to seek out and pay out of pocket for specialists who can diagnosis this crazy mess.