The ME/CFS advocacy conundrum

A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising. Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain our lack of political and financial initiative that I could not quite articulate.

However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day. The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction.

Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS patients.

MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.

Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.* Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.

The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma (maybe I just really can't handle stress, maybe I am just weak-willed). No internalizing of an overwhelming narrative that invalidates of the seriousness of their illness (I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor). No shame and fear that by admitting their disease - or simply stating the name of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.

And patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.

My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.

I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.

It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.

Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.


*Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin to name a few). Indeed my own local support group fell apart when one of our members left taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.


All good points Michelle! It is apples and oranges. Simply the foundation that comes from having a recognized, legitimate, serious disease (government research, doctor specialists, etc.) give MS a big leg up on us. It isn't fair to compare the two and I considered stating why but the blog was already long enough. They do exemplify, though, what might be.

One must not forget studies which conclude that people with severe ME/CFS are less functional that people with almost any other disease.

With regards to parents I have heard several prominent people - one who ran non-profits for a living before ME/CFS - ask where the parents are. Despite those you mention for some reason the parents have, in general, not shown up - perhaps because of the legitimacy issues.

I daresay that if you or I had more opportunities to contribute, in which ever way we could, to advocate I think we would. I think there's been a dearth of opportunities. Unfortunately one reason there is a dearth of opportunities is that we as a group are not strong enough to create them! To some extent we just have to get over the hump. We're fighting a strong wind at every turn; on the political sector, the research sector, the physicians - its hard to make headway when you're up against so much. I think we haven't had really effective, inspiring leadership either.

I also look at what you go through with your so difficult symptoms and problems and yet you contribute magnificently (in excellent prose!)
Hi Michelle -- I've been off the boards for several weeks and just catching up with the Hillary Johnson/Kim Kenney mudslinging on the other board.

I've pretty much been a dues paying CAA member for at least ten years - even though I've always had issues with them. I get my discomfort with the organization mixed up with my discomfort with identifying with the disease.

It was eye-opening to read the long exchange in the forums, where so many people express distaste with the organization, the Chronicle, etc. For my part -- I'm grateful to Kim Kenney and the organization for whatever they have done, especially making it easier for people to prove SSDI.

But there is something seriously wrong with their message. They do not speak well as advocates for us. As a former PR and marketing person with several Fortune 500 companies, I know they've been going at it the wrong way.

For example -- a few years back when they got a big PR firm on board -- I'd hoped to be a spokesperson and signed up for the tele-training session. But the organization and PR firm -- contrary to best practices -- were not in the least interested in listening to the client -- US!

I've been on national TV for other purposes -- I know I'm a good spokesperson. They were TELLING ME what to say - not just coaching -- Above all they were not interested in listening at all. We were spokespeople for them -- the organization -- who had their own GroupThink agenda. They were not interested in communicataing our stories at all.

I'm afraid this "our message not yours" may be true of other functions as well. They send us mutliple choice questionnaires -- but they do not let us speak for ourselves in our own words, with the backing of the organization, as I see other illness advocacy groups do. We're being censored.

When I first got sick, I did try to educate those around me with the Chronicle, their information pamphlets, etc. But they often had the opposite effect. The Chronicle highlighted very sick people with great "support" systems -- where I found almost none. When my mother read a story about a PWC Mom she had a hostile reaction. "Sick people shouldn't have children." She just thought -- these people are in la-la land.

I felt bad for bringing this to attention of the organization. Likewise -- I am completely baffled as to the point of the traveling exhibition of people with CFIDS. There is no urgency there -- all seem to have their lives under control, with great resources and support systems.

I have to wonder if they're equally loopy regarding lobbying, working with the government agencies, etc.

I don't want to sling mud -- I just want clarity. I wish I felt the CAA was speaking for me, but in so many ways, their message embarrasses me. So -- I go on my way, I find other forums like this, I publish my own articles, I see my specialist in NY at least once a month, I spend a ton on supplements and do my own versions of CBT, AR, yoga, healthy quiet life.

I have an issue with advocacy in that I hate bothering people with my problems. I'd rather try to handle them alone. I hate hitting people up for donations. I think there are a lot of people like me -- just trying to get better, sometimes succeeding a bit, sometimes relapsing, trying to get back to work or stay solvent. It's not that we don't care about advocacy -- but we have this big advocacy organization that doesn't seem to want to connect with us as individuals.
The big problem is that unless we find a way to exert pressure on these organizations we're doomed to 'this petty pace' of research that we're engaged in. At this rate they'll figure out the cause of ME/CFS when I'm 80 and how to treat it (maybe) when I'm 90 (if I live that long). It's just insane how slowly everything goes.

Throw in the fact that research spending on this disease is actually declining and you see what a big problem we have. The fact that the statistics regarding disability, economic losses, etc. are horrendous we still get little or no play at these agencies. Since they've abundantly illustrated they don't give a damn about this disease - no matter how many people suffer from it - we're going to have to force them to care...or simply resign ourselves to the decades of very slow progress it will inevitably take, barring some sort of miraculous discovery, to make real progress in this disorder. That is how I see our future unfolding - unless we can turn it in another direction.

We may not be able to get much good advocacy but we sure need it.
Cort says:

One must not forget studies which conclude that people with severe ME/CFS are less functional that people with almost any other disease.
Exactly. Which is why my last point about post-exertional malaise, is, I think, the most important. Nobody else has it and it's what makes us so disabled. Couple that with the de-legitimization and it leaves us in an enormous Catch-22 that I don't really know how we can get out of, short of miracles like Judy Mikovits coming along (the point of my last post, as long and rambling as it was).

Christine -- I share a lot of your frustrations with the CAA, particularly having worked (albeit very briefly) in PR too. I'm still working out how to articulate my critique and the muses have not been as helpful as they were with my last two posts. But it's coming. Slowly. :)
Well -- I guess one think I can do is join the MAD advocacy group here -- never give up!
Back about 1996, when I finished reading the amazing book Osler's Web, I could hardly wait for the next issue of the CFIDS Chronicle to come out. I looked forward to seeing Hillary's book featured on the cover, accompanied by tabloid-style headlines.

This is what I remember, and if the details are wrong, the overall impression is right:

When the Chronicle arrived I was extremely disappointed. No, stunned. Osler's Web was mentioned in a single paragraph somewhere toward the back of the magazine, in a right-hand column, part way down the page, mixed in with paragraphs about other publications. I couldn't understand why the Chronicle gave the book such a bad review. A ho hum review. It made me angry.

I continued to support the CAA for many years, in spite of this.

But now the CAA has stunned me again, with their reaction--their ongoing reaction--to the XMRV news. They started by burying the news on their website the way they buried Osler's Web in their magazine, and they have continued to release patronizing, self-serving explanations for their lack of enthusiasm for XMRV research.

I hope the board of directors will try to bring about some change.
I wish we had a way of making the CAA become a true advocacy organization for us. We really need them to.

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