The 'Other' CFS Patients: Cancer Survivors

[Cort]

Last week the New York Times had an article on chemobrain - chemotherapy patients with severe brain fog. Now there's this on the fatigued post-cancer patients - and there's a lot of them.

Unfortunately most of the interest is focused on none other than CBT; our legacy for other severely fatigued patients. Hopefully the cancer researchers will at some point get beyond this 'phase' and really start to work at this problem. That could provide some hope - there are alot of post-cancer patients who are in really bad shape even though their cancer is gone.

1: Cancer Nurs. 2009 Aug 4. [Epub ahead of print]
Fatigue-Based Subgroups of Breast Cancer Survivors With Insomnia.

The purpose of this study was to determine if breast cancer survivors (BCS) with insomnia can be grouped according to their level of fatigue. A secondary data analysis was conducted on baseline data obtained from a randomized clinical trial that focused on a cognitive-behavioral intervention for insomnia in BCS. Participants were BCS (n = 86) with insomnia who were at least 3 months after completion of primary treatment without current evidence of disease. Three subgroups of women were identified with significant differences in fatigue, including exhausted (35%), tired (41%), and restored (24%).

interestingly 25% of women of the women with insomnia were okay. The rest were exhausted and tired. I don't think anyone thinks that the insomnia is the cause of their fatigue - it's just another symptom.

Results suggest that most women have moderate to severe fatigue many years after completion of treatment.(!) Severe fatigue was associated with higher levels of other symptoms and poorer quality of life (exhausted subgroup) (No Kidding) Significant differences in insomnia severity, anxiety, depression, and quality of life were noted among the exhausted, tired, and restored subgroups. By determining symptoms associated with fatigue, patient care will benefit through a shift in focus from treatment of a single symptom such as fatigue to the delivery of a tailored intervention that targets multiple symptoms.

 

[RestingInHim]

2 Amazing Recoveries

Amazingly...my friend who became ill with CFS in 1991 endured chemotherapy for inflammatory breast cancer last year, and now if CFS-free. What does this say about a possible viral cause, perhaps destroyed by the chemo she received?!

I also have a friend who suffered 10 years with CFS. She went to Hong Kong for a business meeting about 5 years ago and caught a violent flu there. Since that time, she has been CFS-free. Her theory, the flu virus knocked her immune system back into sync. Incredible!

I wonder if any researchers have observed anything similar to either of these recovery experiences.

 

[Cort]

system reset

I've always kind of wondered about that: would a huge kind of system changing event perhaps knock the system back into place- allow it to reorganize?

Dr. Vernon has proposed that the HPA axis in ME/CFS is at the wrong kind of stable set point and that if you drain the system of as much cortisol as you can the system will reset itself - the system reset button!

 

[RestingInHim]

Has anyone ever attempted the system reset by draining the cortisol? How would that work?

 

[bertiedog]

From looking at patients who have CFS and have done a Genova adrenal stress profile I have to say that this idea of draining cortisol doesn't stack up. One person comes to mind who has a fraction of the amount of cortisol she should have according to her results and she is housebound, feels terribly ill all the time and suffers dreadfully.
There is some hope for her now cos her doctor is putting her on low dose hydrocortisone and also she has tested very high for organophosphates and her doctor is looking for a protocol to help her eliminate this. She told me she worked for 20 years as a secretary in a chemical factory and was working then when she first went down with ME/CFS about 15 years ago.

Her son who is 23 also has developed ME/CFS and had to give up University because he is so sick and guess what I ran the ASI for him and again severely low cortisol even at 23. Again his doctor is going to try him on low dose h/c so we will see if there is any improvement.

From my own experience one needs to RAISE cortisol if one wants to have a life not lower it even further.

Pam