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!