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Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern University

I wonder if this is good news for the severely affected patients too? Since her "exercise" recommendations it seemed to me like Dr. Klimas is too out of touch with this patient group who needs help the most. Going forward, I hope each and every organisation and initiative will refuse to neglect the needs and characteristics those of us with severe disease have. This starts by offering home visits and home phlebotomist services and of course, although this has probably been discussed elsewhere at length, by making it absolutely clear that any level of "exercise" is extremely harmful to patients with severe M.E.

I agree 100%. And with all due respect for Dr. Klimas, I simply cannot see how 'exercise' is in anyway appropriate for the most severely ill. Several people have posted about the need to give up activities in order to exercise. For the severely ill it's not just "giving up activities." The most severely ill aren't able to do the basic "activities of daily living" and to suggest something that:

a) means they'll have to give up some essential portion of their self-care,
b) leaves them unreasonably vulnerable to serious setbacks if the slightest unanticipated demand (like having to reschedule a doctor's visit - could be a major logistics nightmare) arises doesn't make sense to me and,
c) suggests to the uninitiated that if an expert like Dr. Klimas recommends 'exercise' them we all ought to be exercising

The most severely ill amongst up do not need to increase their activity level in any way shape or form. They need REST. When a patient is experiencing severe autonomic neuropathy (check out this NIH link - sound familiar?), the last thing they ought to be doing is raising their HR, even temporarily (if you do, you are very likely to experience life threatening bradycardia/arrhythmia as a direct result). ME patients need to be given permission by their doctors to respect what their bodies are telling them.

I agree that the study of CFS/ME is not a science of the most severely afflicted. If you aren't sure if you're amongst the most severely afflicted, you probably aren't.

All of that said, I'll step off my soap box to thank Dr. Klimas for her years of dedication to ME and CFS patients (as well as GWS patients) and to wish her the best of luck in her new clinic.