Friday, December 8, 2006

CFS and MS

Excerpts from an article by a former physician who has M.E./CFS

 

M.S., M.E. AND YOU

By S. Anderson, M.D.

... research has found the cause of CFIDS/ME and it is the same as multiple sclerosis (M.S.)

How does one diagnose M.S.? A medical history is taken, a physical that usually produces no abnormalities that jump out at a physician, blood tests to exclude anything else it may be, neurological tests and even an MRI (magnetic resonance imaging) may be taken. In other words, it is diagnosed the same way that CFIDS/ME is! The regular blood tests come out normal. Slight neurological abnormalities may be noted such as allodynia which is sore or tender skin or Babinski's reflex.

Early signs of M.S. are often mistaken for other disorders including stress, a transient ischemic attack, a tumor, or a vitamin B-12 deficiency and misdiagnosis is common such as vasculitis (inflammation of the blood vessels), Lupus or Lyme Disease. Indeed, these are all common misdiagnoses found in CFIDS/ME and both M.S. and CFIDS/ME patients are commonly told to see a psychiatrist in the beginning! ... In M.S., all parts of the nervous system can be attacked so the symptoms can vary just as they can and do in CFIDS/ME.

Among the symptoms [of M.S.] listed are primarily "fatigue", followed by muscle weakness and numbness, pain, vision and speech problems, cognitive decline, and bladder and bowel dysfunction. These are all familiar to all those with CFIDS/ME.

CFIDS/ME is not M.S. but it may well be another form of M.S. and may be found to be a more severe subset of M.S. since those with CFIDS/ME generally are known to suffer daily much more than patients with M.S.

* * * * * *

If CFS and MS have essentially the same symptoms, then why do MS patients get sympathy and respect, while CFS patients are verbally abused and told to get back to work? The answer is, better PR. There is no doubt in anyone’s mind nowadays that MS is a "real disease". Meanwhile, for years the media have engaged in a campaign to discredit CFS as depression or psychosomatic, aided and abetted by the silly name Chronic Fatigue Syndrome imposed by CDC to minimize another tragic epidemic too soon on the heels of AIDS.

CDC put out PSAs five weeks ago, finally acknowledging that CFS is "real". Yet the only time I have seen those PSAs on either of the two stations I watch most (CNN and NBC) was a snippet during the news on the day they were released. Not one word about "CFS is real" in our local newspaper. Hardly a sufficient press campaign to undo 20 years of slurs.

Perhaps if the word gets out about the similarities between CFS and MS, we'll get more respect. 

Wednesday, December 6, 2006

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.

CFS and "chronic fatigue"

In RCTN, Caryn writes: keep out of something you have no frame of reference for.

That's the best advice I've heard this week. If your only frame of reference for CFS is that "it has something to do with fatigue", then KEEP OUT OF IT.

There is far more to CFS than mere "fatigue". To tell a CFS patient "I'm tired, too" simply proves that you're unaware of the extent of the disability caused by CFS.

And then there are the people (both doctors and laypeople) who confuse "chronic fatigue" with CFS. Mark Twain said the difference between the right word and the almost-right word is like the difference between lightning and lightning bug, and the same is true here.
CFS is not "chronic fatigue". It's a Central Nervous System dysfunction with innumerable symptoms which are far more disabling than the fatigue. Many of these are observable symptoms -- not something you have to take the patient's word for. Fever is visible, so is vomiting, fainting, clumsiness....

Some doctors, who could not, or would not, acknowledge the difference between "fatigue" and CFS, perpetuated the hoax that the symptoms were all subjective and there was no proof of illness. Other doctors compiled lists of symptoms and tests that proved there was a problem.  Some doctors perpetuated the hoax that "such a wide variety of unrelated symptoms, it has to be hypochondria." But neurologists proved that every one of the symptoms can be caused by Central Nervous System dysfunction.

People who don't know what they're talking about where post-viral CFS is concerned would do themselves a huge favor to stop talking and start listening. They might learn a few things about the disease instead of continuing to repeat false information.

Monday, December 4, 2006

CFS vs. Fibro - Part 2

Dr. Yunus is a renowned fibromyalgia researcher.  The hard-copy article apparently included charts showing how the symptoms differ between CFS and fibro, but those charts were not included in the online version.  Your local hospital's medical library may be able to help you find the original article with the charts.  If you find an online version with the charts, please add a comment with a link to that version.

As Dr. Yunus notes, symptoms are not as severe in fibro as in CFS.  This has led some people to theorize that fibro is the mild form of the disease and it progresses to full CFS over time, while others think they are not the same disease at all.  Jodi Bassett notes that there are divergent lab tests, and the people who have been given a dual diagnosis have the test results applicable to CFS, not those for fibro. 

Excerpts from:
Chronic Fatigue Syndrome and Fibromyalgia Syndrome:  Similarities and Differences by Muhammad B. Yunus, MD, University of Illinois College of Medicine at Peoria, Peoria, Illinois


The published reports have demonstrated apparent similarities between these two common syndromes, yet it is also clear that these syndromes are not identical.

Clinical Features

     It is clear that these features overlap considerably between the two syndromes.  However, it appears that several features are quantitatively, and perhaps qualitatively, different (Table 3). While data on cognitive impairment in FMS is limited, clinical experience would suggest that symptoms related to such an impairment are not as common or severe in FMS as they appear to be in CFS.   ...  Although fatigue is present in 80 to 90 percent of patients with FMS, it is overall less debilitating in this syndrome than in CFS.


Immunologic and Other Laboratory Findings

    Abnormal immunologic findings are very common in CFS, leading to the nomenclature "chronic fatigue and immune dysfunction syndrome."

    Hematologic abnormalities, including complete blood count and erythrocyte sedimentation rate, are absent in FMS and variable in CFS. 

    A host of infectious agents, including EBV, measles virus, cytomegalic virus, enteroviruses, human herpesvirus 6, retroviruses, and Borrelia burgdorferi, among others, have been implicated in CFS. Antibody titers to Epstein- Barr virus were not significantly different among patients with fibromyalgia from those in matched normal controls

    Cerebral blood flow imaging by SPECT (single photon emission computerized tomography) and PET (positron emission tomography), as well as topographic brain mapping with evoked responses using BEAM (brain electrical activity mapping) have been reported to be abnormal in a large majority of patients with CFS, showing a pattern different from normal controls and those with depression.


Pathophysiological Mechanisms

    Fatigue, the overwhelming symptom in CFS, is most likely to be central in origin, although secondary changes in muscles due to deconditioning may further aggravate this symptom. (Mental or physical stress, poor sleep, depression, and infections are other aggravating factors of fatigue).  Many of the neuropsychiatric features of CFS may be explained by limbic dysfunction (I prefer the term "dysfunction" to "encephalopathy," since such a dysfunction may occur due to neurochemical aberrations, and not necessarily due to anatomic lesions or pathology), as has been suggested by Goldstein.

it is clear that neither CFS nor FMS is a psychiatric illness

Conclusion

    CFS and FMS share common characteristics, but some features are more prominent in one syndrome than the other.