Friday, September 04, 2009

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.


Cuphound said...

> 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.

I completely agree with this thesis.

> No subconscious minimizing
> or outright invalidation of
> the seriousness of their
> illness (it's not like I've
> got cancer or Rhumatoid
> Arthritis or AIDS).

I have this. Actually, my favorite self-minimization is that I don't have chronic fatigue syndrome. I frequently tell myself "Stop whining, you slacker, you could be in Michelle's shoes. Get off your lazy ass and work because wouldn't she just love to have this much opportunity and you can't give it to her."

I wish I were a better godfather. Then maybe I could explain God's justice. The best I've come up with is that it's His fucking story. He tells it the way he wants. He hasn't written us out yet. Where there's life there's hope.

Michelle said...

Very true, you do minimize, as it is a common coping mechanism for anyone dealing with horrible situations. I did not articulate myself well in that sentence and have changed it to state that ME/CFS patients have an overwhelming narrative they often internalize that completely invalidates their illness.

And dear, you're an amazing godfather. Have never ever regretted choosing you to walk with me on my spiritual journey.

Joanne said...

Hi Your blog came up on my Google Alerts. No doubt you may well have considered if your mE/CFS could be related to Lyme Disease but were you aware that about 50% of blood tests were unreliable in late stage illness or that there is a huge contoversy going on that has forced IDSA to review their guidelines.

My ME/CFS/Fibromyalgia was eventually found to be lyme Disease and following iLADS guidelines on long term antibiotics I have my life back and am nearly 100%.

If you want to check out more information check out my blog
My story is bottom right but the many links into research and ME/CFS are at the top right.

Good luck with finding what works for you.

cinderkeys said...

Thanks so much for this post, Michelle. Very good points. I started to comment and realized it was turning into a post of its own. So I've written something on my own blog and linked back to you. :)

M. said...

The problem is also that MS advocacy is much easier. I've been doing CFS/ME advocacy in Finland for many years, but haven't really achieved anything (except finally getting a 95% confirmed publication deal for the previously self-published Finnish version of my CFS/ME/FM treatment book).

I've offered articles for magazines (I'm a journalist after all), sent review copies of my book, sent corrections to media publishing misinformation (there are 1-3 articles a year), contacted medical websites and much more. Friends have written politicians too. Guess what we've achieved? Nothing. It's pretty much impossible to advocate for something that doesn't exist here, officially or otherwise.

P.S. There are loads of effective treatments for CFS/ME and while they aren't all covered by insurance companies, many are so inexpensive it doesn't matter, like low dose naltrexone. Low dose naltrexone is also by far the most effective treatment for MS (which your friend should be using instead of the crappy and irrational CRAB drugs). It stopped the progression of my CFS/ME 2.5 years ago. Without it, I would probably be dead.

Anonymous said...

Excellent points. I'm too tired to write more.

TKno2 said...

I think your point about a lot of people with ME/CFS not being diagnosed (18% is the figure you give) is a good one and an important one.

When I realised I wasn't getting better, one of the things I realised was that we needed more people diagnosed to make the "movement" stronger.

So, one awareness-raising for that reason was one of the things that drove me. As well as the fact that it shouldn't have taken over five years to get diagnosed and if I would have got diagnosed earlier I would never have become severe/very severe and chronic (having being mildly affected for some of the first few years).