CFS is not Fibro -- Part 3

Excerpt from an interview with Dr. Cheney on the DFW CFIDS support group website:

Post-Exertional Fatigue Indicates a "Q" Problem

Next, the NJ team looked to see if there were any symptoms that were 100% observable in the group of disabled cases, but not in the others. They found that there was only one symptom (among the loooong list of CFIDS symptoms) that was seen in 100% of the patients with the Q problem. Only one. Post-exertional fatigue. That is, when you push yourself physically, you get worse.

What distinguishes CFIDS from FM? Post-exertional fatigue. Patients who have FM, but not CFIDS, can exercise–it helps them. FM patients do not have a Q problem. MCS patients do not have a Q problem. [Unless they also have CFIDS.] They do have other issues that overlap with CFIDS. Martin Pall's conceptual framework allows us to lump these people all together (FM, MCS, GWS, CFIDS). However, Q is what separates them. CFIDS patients have a big Q problem, and post-exertional fatigue is the one symptom that correlates with Q.

Post-exertional fatigue is the number one symptom reported by people with ICM. Among the disabled CFS patients [the severe group], 80% had muscle pain, 75% had joint pain, 72% memory & concentration problems, 70% unrefreshing sleep, 62% generalized weakness, 60% headaches, 60% lymph node swelling, 68% fever and chills, and, 50% had sore throat. Though some symptoms were certainly more common among the disabled patients, the symptoms varied–with the exception of post-exertional fatigue. They all had that.

This suggests that it is not so much the symptoms that are disabling. Rather, "the symptoms are reflecting an interaction (or a nexus) between Q, and how you compensate for Q. Depending on the nature of the compensation, which is individually distinct, you will get an array of symptoms that is individually determined. Just like this: ten patients with MS will not have identical symptoms. Any more than ten AIDS patients, or ten cancer patients, or ten of anything." Why? Because the disease process–which they all have–will manifest differently in each person. The specific symptoms will arise out of factors unique to each person; those factors will determine how the disease plays out in each.

"Within the non-disabled [CFS] group they saw pretty much the same thing–it's just that the percentages were a lot lower. For example, fever and chills were found in only 5% of the non-disabled. The highest percent was post-exertional fatigue seen in 60%. But 40% of the CFIDS patients who were not disabled did not have post-exertional fatigue, but did have CFIDS."

"The reason for that is, of course, if you look at the original case definition, post-exertional fatigue–that is exercise worsens the syndrome, effort-related exacerbation, push-crash phenomenon–is not a major criteria, it's one of the eight minor criteria. It's possible not to have that and still meet the case definition. But all disabled patients have that, and 60% of non-disabled have that." [It's possible to not even have post-exertional fatigue and still have CFS. However, all disabled CFS patients have post-exertional fatigue, as do 60% of the non-disabled.]

"More importantly, all disabled CFIDS patients, all of whom have post-exertional fatigue, have low "Q" and are in heart failure."

* * * * * *

Clearly, the experts aren't buying into the theory espoused by some of our commenters that someone with fibro knows exactly how a person with CFS feels, nor that the person with CFS can push themselves in the same way as a fibro patient.

Test results are different in the two diseases (documented in Jodi Bassett's excellent article on www.ahummingbirdsguide.com).  They may have similar symptoms, but CFS also has symptoms in common with MS.  (NCF-NET has recent research showing that the same virus may be implicated in both MS and CFS.)  That doesn't make CFS the same disease as MS, far from it; it just means they have some symptoms in common, just like CFS and fibro, or CFS and AIDS.

Those with CFS cannot exercise without relapsing; I've proved that empirically time and again over the past 19 years.  I finally accepted that cleaning my house properly was going to land me in bed for a while, and that simply wasn't a good trade-off -- my goal is to get better and return to work, not repeatedly make myself worse and go to the hospital.