Saturday, September 5, 2009

ME/CFS advocacy: A few things you can do

Good post on Behind the Surface about The ME/CFS advocacy conundrum. It asks why patients with multiple sclerosis do much more advocacy for themselves than patients with ME/CFS.

Unfortunately, there are many reasons to choose from:
  • Much of the time ME/CFS sufferers feel too sick to feed themselves, much less write their congressman.

  • When they do feel well enough to do something, they have to conserve their energy for all the stuff they're not able to do at other times (like feeding themselves).

  • If they can make the time to advocate, they have to be careful not to push themselves too hard. With ME/CFS comes post-exertional malaise -- exertion can cause real damage, and the damage can be permanent.

  • MS patients receive the sympathy they very much deserve. ME/CFS patients often get brushed off by medical staff, friends, coworkers, and family who think they're "histrionic, lazy, and/or hypochondriacal."

  • Caregivers who do believe their parents/partners/children are sick often become too overwhelmed to advocate. They're too busy helping said parents/partners/children with activities of daily living to want to do much else.
"Unfortunately," says Michelle on Behind the Surface, "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."

Michelle doesn't offer a solution to this conundrum. She doesn't have one. Neither do I. I know very little about how to harass the government or take on the entire medical establishment. When I asked myself what I could do in the public realm, the best I could come up with was write a song and pen occasional blog posts like this one.

Since I don't have any big sociopolitical solutions today, I'll leave you with suggestions for small, personal actions you can take.
  • If you know someone with ME/CFS, don't automatically assume they should get psychiatric help or suck it up because you "feel tired too sometimes." If this person wasn't a neurotic pathological liar before getting sick, it's unlikely they've suddenly turned into one. (Same goes for people with Lyme disease, fibromyalgia, multiple chemical sensitivities, and other invisible illnesses.)

  • If possible, accompany the sufferer in your life to doctors' appointments. This serves two purposes. First, if you know enough about the person's symptoms, you can remind them of questions they wanted to ask if they're fogged and forget. Second, doctors who don't acknowledge the reality of ME/CFS (or Lyme, fibro, etc.) tend to display better manners when there's a healthy witness present. I'm not sure why this is. Maybe rude doctors don't feel they can bully healthy people as easily; maybe the healthy person's belief in the sick person's illness lends it more credibility. In any case, it works.

  • Quit calling it "chronic fatigue syndrome." Before someone invented that name, it was called myalgic encephalomyelitis. Refer to it as ME and the response will likely be "What's that?" rather than "Whatever, I get tired too."

  • If someone else calls it chronic fatigue syndrome, it's easy enough to say something without getting annoyingly self-righteous. For instance, "It was called myalgic encephalomyelitis until 1988, when the insurance lobbyists got involved."

  • If you have trouble pronouncing myalgic encephalomyelitis (my-AL-jik en-SEH-fa-lo-my-el-I-tis), just say ME.
Any other thoughts on actions we can take, big or small? Post your comments here or at Behind the Surface!


Anonymous said...

Thanks for making this page/site easy to read. I find so many sites for CFS sufferers are hard to read and follow, not what you want when your concentration is poor! However it was not easy to read on my mobile phone.

Angel said...

A very insightful post!

I've been running into the same problem for fibromyalgia support groups. We're all so tired and in such excruciating pain that just about the only "extra" thing we manage to do is spend a few minutes a day talking to one another. We don't have enough brain power to do more than that.

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.

Jannie Funster said...

I've listened to this song before on this site and I thought it was about genenral depression. It's deeper now, reading this post.

I do have 2 friends with fibromyalgia. They suffer mostly in silence.

I will count my lessons especially today.

Joanne said...

Hi Cindy I have commented on your blog some time ago about my ME/CFS/Fibro turning out to be Lyme Disease.

However since the recent IDSA review presentations on their website particularly Stephen Phillips one show the problems with seronegativity and persistent infection of lyme disease you might like to post something on your blog about this.

The chatline Eurolyme I belong to, 75% of us were first diagnosed with ME/CFS and eventually then Lyme and on antibiotic treatment regain our health over time.

I know Dr Shor is a well respected member of ILADS but I had not realised he is a specialist in ME/CFS and that he found 50% of his patients actually had Lyme Disease. This is an article about his work.

Would you consider putting this on your links on your blog which would help others to consider if their ME/CFS/Fibro is perhaps as a result of Lyme Disease.

Until accurate blood tests are available for lyme it can not be ruled out on negative blood tests.

If you want to read more info visit my blog with my Lyme story on the bottom right and links into research and charities top right.

How many ME/CFS/Fibromyalgia patients are properly assessed to see if it could be Lyme?

cinderkeys said...

Anon: Sorry this was hard to read on your phone. I have no idea how to make it easier without cutting the posts way short.

Angel: I bet support groups do more than you think. Look at it this way ... the CBT/GET peddlers would like nothing more than for people with ME and fibro to believe their problems are psychological. It's a lot easier to make sufferers unsure of themselves if they're isolated. Talk to people with the same diagnosis and symptoms and you realize that THEY'RE not crazy, so you probably aren't either. The personal is political, dammit! :)

M: Congratulations on the 95%-confirmed book deal. I acquired the self-published version for the person I know with ME/CFS, and he consults it often. I hope the situation gets better in Finland. :/

Jannie: If you don't have ME/CFS or similar yourself you have to listen pretty carefully for the specific disease references. I'd be interested to know how quickly people who have it would tune in to those references, given that most listeners don't pay much attention to the lyrics right away. So far everyone who's commented to me on it got my "This is about ME/CFS" spiel before ever hearing it.

Joanne: I don't know enough about Lyme to intelligently talk about it yet. Hoping to remedy this, since, as you say, some people who have it are misdiagnosed with ME/CFS. Differential diagnosis would help everyone involved. I'll be getting Cure Unknown by Pamela Weintraub when it's out in paperback; should be enlightening.

DeppityBob said...

Do the fibro-like symptoms of Lyme disease disappear after treatment, or are they permanent? That could make a lot of difference for a lot of people. I would be pretty sure what I have isn't Lyme, though I have been attacked by ticks a few times. Fibromyalgia is pretty common in my family, as it turns out. But nothing really eases fibro, with the ironic exception of...marijuana. Unfortunately, that's a bad idea for me for more than one reason, but it does work. So there are two windmills to joust at: public support for ME/CFS/fibro *and* approval of medical marijuana. HA!

cinderkeys said...

Yeah, with the political climate the way it is, pairing legitimacy of ME/CFS/fibro/etc. with medical marijuana probably wouldn't go over well. "You know that pain you think is all in my head? I want marijuana for it!"

Probably best to fight for each thing separately. Maybe by the time the populace thinks it's OK to give pot to chemo patients, they'll believe these diseases aren't psychological. :P

Joanne said...

Pam Weintraube's book Cure Unknown is amazing links into many of her articles are in my side bar at the top of my blog.

Also links into Under Our Skin where you can view the trailer and also see other extracts from the film.

There will be many people with ME/CFS/Fibro diagnosis who will find that it is actually Lyme causing their ill health.

So while IDSA review is taking so long it is good to spread the word so that others can consider as a possible diagnosis.

TKno2 said...

One thing that people can do is sign a petition to complain about the CDC definition - read for more details. Just shy of 1500 at the moment but it's really dried up recently.

People are hoping to work on pressurising the CDC on its CFS program in the next month or so. Go to: for more details.