Tag Archives: CFIDS Association

Weekend sendoff: Preaching to the choir

My optimism about this blog waxes and wanes. Not my enthusiasm — I love working on it and have no intention of stopping. But like most skeptical bloggers and writers, I often wonder if I’m not just preaching to the converted here. I’ve known chronically ill skeptics who would not have been taken in by the quackery I discussed in my last post. And I’ve known chronically ill people who are 100% dedicated to alt-med, no matter how questionable.

Is there anyone left in the middle? Everything these days, from American politics to medical issues that have been needlessly politicized, seems to have polar opposites but no middle ground. I assume there is actually a middle, but I don’t know what they’re doing. Are they reading my blog and filing it away for future reference? Are they returning to the comfort of forums where all treatments are considered equal? When I write a post like Tuesday’s, which is obviously not aimed at people experienced with skeptical inquiry who don’t need the primer, I do try to publicize it on chronic illness forums and other places where I hope these “medical centrists” may exist. But I have no idea if it’s working.

I did see a thread belittling homeopathy on a forum where I once saw a thread cancelling any discussion of it, so that gladdened my tiny, mean little skeptical heart. I’m not claiming any credit; it was just nice to see.

In other news, although my fundraising efforts for the CFIDS Association must be considered a colossal failure, happily two wonderful gentlemen were kind enough to donate, and as such have earned the right for me to compose a (probably bad) sonnet about them. Derek Bartholomaus, of the Jenny McCarthy Body Count, and @Data_Jack — don’t think I’ve forgotten about you!

I send you off with an allegory for what I’d like to see happen: chronically ill skeptics and believers in CAM, natural enemies, coming together for a productive discussion. (Cuddles are optional.)

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Weekend sendoff: More bad advocacy

No, I’m not going off about the CFIDS Association of America again. This time my sights are set on the ME Association in the U.K. If you click that link, you’ll see a survey — with, as of this writing, sadly equal “Yes” and “No” responses — concerning the coverage of homeopathy by the National Health Service. (I don’t have the power to Pharyngulate a poll, obviously, but maybe with your help we can “nerf” it a little.)

Taken by itself, this poll isn’t too worrying, since this is a hot topic at the moment. But once you learn more about the MEA, as I have thanks to Margaret Nelson, it’s extremely irksome. Margaret wrote a letter in response to an article in the MEA’s publication ME Essential. The part she quotes in her letter is bad enough:

If you are thinking of choosing homeopathy as a complementary form of treatment for ME/CFS/PVFS, it is vital that you find a qualified practitioner who understands the need for a gentle approach when treating ME/CFS/PVFS.

What would constitute a non-gentle homeopathic approach? Waterboarding?

While I don’t have the original article, the very first sentence (as can be seen in Margaret’s link) is telling enough:

Within the scientific and medical press and popular media there is continued debate for and against homeopathy, particularly its continued provision within the NHS.

Equating science with popular media in this “debate” is misleading to say the least. There is no information in this sentence to dissuade the perception that science is just as much perpetuating this debate as popular media. The fact is, of course, that scientific disciplines of all kinds have completely closed the book on homeopathy. There is absolutely no reputable science to support it. Meanwhile, the popular media has no interest whatsoever in promoting reputable science, unless that just happens to intersect with their goal to grab as many eyeballs as possible. (Not, I hope, literally.) For a perfect example, see Time magazine’s decision to go to Jenny McCarthy for their autism report.

I maintain that providing patients with information about how to get tested for XMRV right now is bad advocacy. However, this goes well beyond that. Shame on the MEA for the same kind of wishy-washy attitude towards poor alternative medicine that I’ve reported about on chronic illness “support” forums. A group that’s supposed to advocate for very sick patients should not be entertaining the notion that homeopathy is an acceptable form of treatment. It should be promoting valid medical treatments, and any alternative ones discussed for its members’ edification should not include those that have been roundly proven to be garbage. They could redeem themselves by providing information as to why the NHS should not be paying for homeopathy, once this poll closes…but does anyone want to lay odds on that happening?

Otherwise, I want to thank everyone for the support I’ve gotten on my new exercise plan. Since Monday, I’m four for four. Hopefully I’ll keep it up and have a more impressive number next Friday. For now, I send you off with a hilarious video that demonstrates what a homeopathic emergency room might look like.

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Hey you! Dill weed.

A few things happened over the weekend. I had a delightful lunch with a friend, which is partly why I’m posting on Tuesday instead of Monday and owe everyone emails. I made some experimental and ultimately yummy egg salad. And I unsubscribed from the CFIDS Association’s Facebook page.

This last should bring some relief to those of you tired of my ranting about CFS patients and the Holy XMRV Grail. I’m not saying I’m done hammering that nail, because it still catches on my clothes and gets under my skin, but I’m putting a moratorium on entering any CFS-related forums or groups for now. I know I want to do something, but I don’t really know what that is, and so I just get frustrated with my fellow patients without having anything especially productive to add, since we’re way past “XMRV isn’t science yet” at this point. It’s easy for some people to leave their woo groups behind when they become a skeptic, but I need to stay plugged into chronic illness and especially CFS information at least to some extent. And those communities are filling up with bad science now even more than before the WPI’s study, and it’s just too deep for me. I’ll get back to this.

So instead I am posting the recipe for that egg salad. “Recipe” is actually too generous of a word. It’s a map to your destination, not directions, because my experimental process is extremely sloppy. My usual measuring amount is “about this much ought to work.” You can consider everything in this recipe “to taste.” I call it Skeptical Egg Salad because I was, as you may be after reading the ingredients, not sold on the results of the experiment until I tasted the proof. And it was good.

Wrong eggs, but 'tis the season, amirite?

Ingredients:

6 to 8 hardboiled eggs, peeled and rinsed
3 to 5 strips of bacon, chopped into lean crumbles
A dollop of light mayonnaise or similar
Fresh dill, finely chopped
Fresh celery, finely chopped
Pine nuts
Capers
Old Bay seasoning
Celery seed
Dried dill weed
Paprika
Salt and pepper

Mash up the eggs real good-like. Put in as much of everything else as you like. Stir and refrigerate overnight. Eat on Triscuits.

Notes:

  • Because you’re putting so much texture into this salad, the egg base should be very smooth. I’ve found a potato masher to be my implement of choice. If you’re looking for a psychological as well as a taste sensation, try visualizing each egg as the skull of a person you’d like to see smushed. Cathartically mash it into minced-up goo. (Note: if you find yourself making egg salad on a daily basis, you may wish to consider therapy.)
  • Yes, I did mean to include both fresh and dried dill. I like my dill salad with a little egg in it. The dried dill and other spices are the reason to refrigerate it overnight, to let the flavors sink in. However, the bacon will be sexier if you serve it right away, so it’s up to you.
  • Be sure all your washed ingredients are very dry before you mix this together. It’ll get a little watery eventually because of the celery and dill, but avoid this initially by patting down the eggs and veggies. If you’re particularly suspicious, go ahead and give them a good frisking, but make sure someone else is present if you decide to do a strip search.
  • Traditionally I think I’m supposed to provide a photo of the finished product but, you know. It’s egg salad. Plus, I ate it all.

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