How to help someone with chronic fatigue syndrome?

October 16, 2007 7:49 PM

An older female relative who lives in the midwest has recently been diagnosed with chronic fatigue syndrome. She's been suffering from it for a few years already, so she's in bed most of the time at this point. What can I do to help?

I'd like to send her something to help out, but the amount of information on the web is overwhelming. What's recommended and would be good to try first? Natural nutritional supplements (nothing artificial please), tai chi videos, health diary, anything?

There are also very few doctors in the area that have experience with this disease and they all have waiting lists that are months long (her past doctors all told her to see a psychiatrist). Her husband is unsupportive (thinks if she just exercised more she'd be better) and English is not her first language. So if you have advice on anything she can do to cope in the meantime, that would be really helpful. I read somewhere that warm baths before bedtime help you sleep better?

I've set up a throwaway [e-mail] if you have further questions. Thank you.

posted by anonymous to health & fitness (9 answers total)

Send her a good book or a good movie or something else to do while in bed. Unless you are very close with this relative (and have already been discussing treatment with her), don't send nutritional supplements, etc. There are a very large number of things that various people have suggested might help with CFS and she should be able to pick for herself which (if any) she wants to try. If you are close, you can help her sort through the available info and choose some things to try.

If her husband is not supportive, the thing she probably needs most is emotional support. Being in bed all day can (obviously) be isolating as well. Phone calls/visits would surely be appreciated.

Shouldn't the doctor who diagnosed her be able to help with treatment?
posted by ssg at 8:13 PM on October 16, 2007

I've had myalgic encephalomyelitis (not going to get into the M.E./CFS fight here) for three years and am currently housebound myself.

If English isn't her first language and she doesn't have a good support system, maybe helping her locate and get in to see a supportive, well-informed doctor could help. If you are close to her, that could mean making phone calls, assembling, filling out, mailing or faxing forms to help her get her past charts and test results together and writing a health history. In preparing for the visit, you could help her track her symptoms so she can provide a picture of what her current situation is like. You could help her put together a list of questions she wants to ask the doctor.

Find out how she is most comfortable communicating and ask how you can help her. If she is bedbound, phone conversations may be more than she can do. Make sure she has access to a computer - a laptop would be best - and the internet. If she doesn't have a bed desk for her computer, you could get her one. I use the Laptop Laidback.

If her partner is a native English speaker, you could send him to A Hummingbird's Guide to read more about what she is experiencing. That site, which is written by Jodi Bassett, a very well-read person with M.E., spells out in no uncertain terms that exercise beyond the affected person's level of ability (which can be incredibly low) can be very dangerous. Jodi also has a list of best books on M.E.

Read that site yourself, too, and offer her and her husband all the emotional support you can. This illness is a misery - because it is between specialties, poorly understood by most doctors, disputed by ill-informed people, and muddied by multiple definitions, not to mention that it's debilitating and currently incurable.
posted by jocelmeow at 8:47 PM on October 16, 2007

Check out works/contact info for Dr Paul Cheney (here or here?). Someone I knew well had great success in distant therapy sessions. He used to work in some barrier island off of North Carolina but I cannot find him there now. He is one of the pioneers in the field and I am sure he would be happy to direct you and your relative from afar. Oh, he has a book too.
posted by carmina at 9:41 PM on October 16, 2007

Carmina and anonymous, here's contact information for The Cheney Clinic.
posted by jocelmeow at 10:36 PM on October 16, 2007

Oh man. I know you live too far away to do this, but cleaning. I have a severe illness that causes fatigue, and for the first time in my life, my house looks like hell and I'm embarrassed to have people over. Maybe a gift certificate for cleaning. Believe it or not the relief can be almost physical (and certainly mental) when the house gets cleaned and I can't do it. Her husband doesn't sound supportive enough to help.

Maybe books on tape to listen to while she's in bed.

I don't want to offer suggestions for supplements, etc. because different things help different people and quite often nothing really works.

Make an effort to keep in touch. It's hard and exhausting to reach out when you're sick, but it's nice to know people are still thinking about you. Send pictures (older relatives tend to love those), and notes and cards.
posted by tejolote at 12:49 AM on October 17, 2007

How sure are you of the diagnosis? In an older woman, the symptoms of CFS/ME are indistinguishable from many other possible illnesses and syndromes, not the least of which is severe depression. But has she been thoroughly worked up for low grade infections, cancer screening, thyroid screening, and mental health?

Just saying. I won't start the CFS wars again here except to say that is is often a diagnosis of last resort that often means "I don't know what you have" when uttered by a doctor.

I myself am a deep skeptic. I think maybe there is something to it, but there is no question it is massively over-diagnosed (especially, by the way, in older women). But not just older women. I myself was misdiagnosed with "CFS" as a strapping young lad who could barely get out of bed -- and this by a serious, respected doctor (head of infectious disease at a major teaching hospital). A few months later it turned out I had an occult bacterial infection that in the end nearly killed me. I have my reasons for mistrusting the diagnosis, in other words.

And give up on the natural supplements. Or not. But you'll be wasting your money.

But I would be 100 per cent sure I had ruled out all other serious possibilities before buying the CFS line.
posted by spitbull at 5:16 AM on October 17, 2007 [1 favorite]

I gave Dr. Weil's Spontaneous Healing to someone going through some health issues like that one and they loved it.
posted by letahl at 6:10 AM on October 17, 2007

jocelmeow, thank you for the find. I am very sad.
posted by carmina at 8:42 AM on October 17, 2007

Can you try to hook her up with a good therapist? I know this might not be easy depending on her cultural background (I'm guessing from the non-native English speaker part) and it may be hard for her to get out of bed and go, but being chronically ill, especially with an unsupportive partner, will make a person real depressed, real fast.
posted by clavicle at 9:15 AM on October 17, 2007