Cortisol and FMS and CFS/ME?

There’s been a lot of buzz over the past week about a study pub­lished in the Jour­nal of Chronic Fatigue Syn­drome that sug­gests treat­ing fibromyal­gia and ME/CFS with cor­ti­sol (a steroid), based on the fact that most patients have low cor­ti­sol lev­els. I do not have access to that pub­li­ca­tion, but would like to point out some concerns.

First, most of the reports are not clear about the fact that this was a lit­er­a­ture study, rather than a con­trolled clin­i­cal study.

Sec­ond, while at least one story did claim that the lit­er­a­ture study was fol­lowed up with an “obser­va­tional study” in which all of the FMS/CFS/ME patients in a par­tic­u­lar clinic were given cor­ti­sol. That does not meet the stan­dards of a con­trolled, clin­i­cal study, which would require an untreated con­trol group and a group receiv­ing place­bos instead of cortisol.

There have been mul­ti­ple clin­i­cal stud­ies of the effects of steroids on FMS/CFS/ME. I found records of stud­ies of pred­nisone and hydro­cor­ti­sone, in par­tic­u­lar. Those stud­ies did not find any pos­i­tive effects from treat­ment com­pared to place­bos, and in some cases there were sig­nif­i­cant prob­lems result­ing from the treat­ments. I did not find a study specif­i­cally involv­ing cor­ti­sol, but I don’t know if that’s because there hasn’t been one or because I don’t have access to the appro­pri­ate data­bases. (I’m sure there are more stud­ies out there, but I don’t have access to Medline.)

I’d strongly sug­gest wait­ing for the results of repeat­able, con­trolled clin­i­cal tests of cor­ti­sol before try­ing steroid treat­ment. Steroids have seri­ous side effects, and should not be taken lightly.

March 22, 2008  Tags: CFS, Chronic Fatigue Syndrome, cortisol, Fibromyalgia, FMS, hydrocortisone, ME, prednisone, steroids  Posted in: Chronic Fatigue Syndrome, Fibromyalgia, From the news

5 Responses

  1. Hope - March 23, 2008

    I could have sworn that cor­ti­sol is asso­ci­ated with the neg­a­tive symp­toms of on-going stress.

  2. cyn - March 23, 2008

    That makes two of us. I know it has some­thing to do with PCOS, too. I’m wary of steroids, in gen­eral — I’ve been told to NEVER let any­one inject me with cor­ti­sone again — so I’m def­i­nitely not rush­ing to try this.

  3. amqueue - March 27, 2008

    Hav­ing a ‘work­ing diag­no­sis’ of ‘prob­a­bly fibromyal­gia’, I recently went on a one-week-pack trial of pred­nisone, on the the­ory that it would help detect/rule out the pos­si­bil­ity of some auto-immune involvement.

    My per­sonal anec­dote is that I felt MUCH BETTER the first two days — the pain went *away*, tho i was still tired. The mus­cle spasm-related pain went away also. Note: I was not tak­ing any other med­ica­tion, just the prednisone.

    As the dose went down, the symp­toms that were par­tic­u­lar life-impacting — the pain, the mus­cle spasms, the spaci­ness — came back. I went back on the meds just for functionality.

    Addi­tion­ally, some sig­nif­i­cant edema I have in my legs went down by at least 50%, by both my assess­ment and that of my mas­sage therapist.

    Alas, that’s come back also.

    My appoint­ment with the rheuma­tol­o­gist who pre­scribed this trial is on the first.

  4. Maija Haavisto - May 11, 2008

    Hydro­cor­ti­sone can be extremely help­ful for CFS/ME and pos­si­bly fibromyal­gia. Sev­eral stud­ies have shown evi­dence of this — I don’t know why you didn’t man­age to locate them. Hydro­cor­ti­sone is the name used for syn­thetic cor­ti­sol, so they are essen­tially the same thing.

    Some peo­ple ben­e­fit dra­mat­i­cally from pred­nisone (myself included — though I’ve quit it a long time ago and am now on low dose nal­trex­one), but this is very rare. Usu­ally the risks out­weigh the ben­e­fits. Low dose hydro­cor­ti­sone, how­ever, is an extremely safe and well-tolerated treat­ment and helps many people.

    Greet­ings,
    Maija Haav­isto, author of Reviv­ing the Bro­ken Mar­i­onette: Treat­ments for CFS/ME and Fibromyalgia

  5. Tash - May 30, 2008

    Hydro­cor­ti­sone is one of the only things that helps me, even more than pain killers. I have seen a bunch of stud­ies say­ing it makes no dif­fer­ence, but it does to me. Just some anec­do­tal evi­dence for some­one with FMS who has tried it.

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