When needed and dosed appropriately, it can make night-and-day differences, yes. If it’s not what’s needed or not dosed appropriately, it can also cause very severe side effects. I don’t mean to scare you or anything, as you’ve been on it for 3 years and obviously your doc must be managing you well. I just didn’t have any of the other low-adrenal function signs to any significant degree, so it wasn’t tested until the looks-at-more-varied-fatigue-causes guy ran more tests than I’ve ever seen on an outpatient!

My adrenal dysfunction is based on a single wrong-time-drawn and thus-not-very-reliable lab test. Hydrocortisone was discussed as a possible treatment to try, but the LA doc said (and I agree) that it risked being overkill with higher risk of those side effects if it wasn’t a real and significant deficiency. My own doc will probably, thorough as she is, rerun the tests appropriately and reexamine that possibility.

I wish you the best of luck in your completely better life– wow! Appreciate and enjoy every day!– and with resolving the achy joints with your doc’s help, and thank you for sharing your personal experience. It’s so nice to hear “old self again” and know that it really does happen for people! Thanks for writing.
-CF

Haven’t read the book. I’ll check that out.

I’m fascinated by the gene marker studies, but until some diagnostic criteria or treatment plans are tested using them, they remain academic. Fascinating, though!

Thanks for the info, and I hope something comes along to help both of us!

Things you might want to keep up with are the CFIDS Newsletter, http://www.cfids.org/subscribe.asp, signing up for pubmed alerts, etc. There’s a wealth of info out there, some of which is legit, some of which is scam, and it helps to become educated on which is which. Even with published research, there’s a huge dichotomy is what’s legit and what’s not. For instance, just about anything that supports Cognitive Behavior Therapy(CBT) or Graded Exercise Therapy(GET) is written by psychiatrists in England or the Netherlands who use a definition of CFS called the Oxford Criteria, which is roundly criticized by legitimate researchers because of the heterogeneous nature of the patients selected, ie it’s a mixed bag of people with depression, people who are burned out, and somewhere mixed in there are actual CFS cases. Basically, there’s a whole universe of politics, people, and theories relating to CFS, which is interesting to the nth degree, but it really helps to know the background of who’s saying what.

Also is the book Osler’s Web. It tells the story of how ‘CFS’ came about, and in the 4+ years I’ve been researching CFS since becoming housebound, this book has been the single most informative thing I’ve come across. Cannot recommend highly enough to anyone who is in any way interested in CFS.

The English ME patient websites, MEAction, ME Association, ME Research UK, Invest in ME, etc. are also very good sources of info since the CFIDS Association, their American counterpart, is partly funded by the CDC, which is itself widely criticized by the patient community, so it seems kind of hamstrung on what it can and cannot say, and who it can and cannot criticize.

One last recommendation is to look around for the half dozen or so gene expression studies that have been done in the last few years, as those are going to be very key in developing CFS research in the upcoming years, for example Dr. Jonathan Kerr’s seven different subtypes in CFS/ME based on gene expression matched with clinical presentations, and Dr. Takuya Saiki’s et al’s recent paper on Marker Genes for Differential Diagnosis of CFS.
http://www.ncbi.nlm.nih.gov/pubmed/18596870