Research breaks Chronic Fatigue stereotypes

NEW YORK - Four times a day, for the last 16 years, Maria Brant takes an assortment of supplements and medications to combat the symptoms of exhaustion, lack of concentration and muscle aches.

She has Chronic Fatigue Syndrome, a disease often dismissed and misunderstood by some medical professionals, even one of her own doctors, reports CBS News correspondent Michelle Miller.

"He said, 'lots of women are tired,'" Brant said. "I knew that I was different."

For Brant and as many as 4 million Americans afflicted with CFS , today science offers tangible proof that they have a disease.

"This study says there is a physical root cause or effect to this disease," said Dr. Steven Schutzer, with the University of Medicine and Dentistry of New Jersey and a study author.

Researchers examined the spinal fluid of CFS patients, healthy people and patients afflicted with a similar disorder - Lyme Disease. They found over 700 proteins, or indicators of disease, unique to CFS patients alone.

Dr. Nancy Klimas runs a support group for CFS patients in Miami. She can finally tell her patients that science has validated their symptoms, and one day they could be tested for it.

"We haven't had something we could just draw blood in a tube and let us measure [and say] 'Ah-ha! You must have Chronic Fatigue Syndrome,'" Climas said.

Once researchers design that test, they can zero in on a cause and develop better treatments. And not soon enough for Maria Brant.

"Talk to me in two years about this study, then we'll see," Brant said.

[JuliaHugoRachel]

Dear Ms. Couric:

Thank you for airing the segment about CFS and Lyme Diseases.

Your One Minute and 40 second episode accomplished more positive media than has been given to us in 20+ Years.

CFS is a nuerological and Immunological disease encompassing viruses such as XMRV, HHV-6, EBV (glandular fever), CMV and a plethora of opportunistic infections. All of these combined act like a nuetron bomb in The Brain, Central Nervous System and Immune System.

Children, Young Adults, Soldiers and Civilians are being infected. It is a myth that CFS and Lyme are not fatal. These viruses are infectious, are spreading rapidly and are linked with many cancers including a type of Lymphoma that masticizes at warp speed.

Thank You again for reporting on this issue from a biological point of view. We may not be able to save my son who is presently battling this disease; but through your episode, many lives will be impacted for the better.
Julia Rachel

[kimidokla]

Lydia do you work? If so how many hours? Do you have children? Are you married? I don't have time for a nap because despite having this disease and Fibromyalgia, Degenerative Disc Disease I do hold down a 40+ week job, do you? I do have a great support system and I do support others. People should be allowed to voice their views. I am use to working two jobs and being very active with lots of physical hobbies and that's been taken away and I am mad and I want something done. Maybe you didn't do as much or maybe your condition is not as bad, maybe it doesn't make you mad if your life was not drastically changed but it does me. I refuse to take a nap, but thanks for the worthless advice!

[kimidokla]

Yes where did that 70% figure that most illnesses are imagined come from, really???? I don't agee with that at all. I agree with you about exercising can improve many health conditions but not CFS, I know because I have it. I had a Dr. tell me all I needed was high impact aerobic exercise I have CFS/ME very bad with Fibromyalgia. He told me to push myself, and I work over 40 hours a week, that was pushing myself just to work. I tried to tell him I couldn't possibly do that kind of intensive exercise everyday and asked him where he got this information to make this kind of diagnosis, he said of course his medical journals. I asked him how old were those journals. It just goes to show the Doctors aren't educated about this disease to tell me to do high impact aerobics knowing that would put me in bed for at least 3 days. Exercise does not help people with our condition!!!! On a good day I may get some walking, or ride a bike that is the best I can do at this point in my life. We need more dollars put into research and more training into the medical field about this disease. Telling me exercise was going to cure me, sad to say I knew more about my disease than he did. More information needs to get out into the public. We are not lazy, this disease effects every part of our bodies, effects our quality of life it has devastated mine. They put money into research everything else why not this????

[cfs2012]

I developed Chronic Fatigue Syndrome after a Hepatitis B Vaccination. Please look into this connection.

[Joannemar]

Thank you CBSnews for this article on this excellent research.

There are many like me who have been diagnosed with ME/CFS when in fact it turned out to be Lyme Disease and on long term antibiotics I have recovered.

A test that can identify each illness is something we are very much in need of especially as currently our doctors are led to believe the testing for Lyme is 100% when in reality it misses more than 50% of cases.

This work does not detract from the work being done by WPI on XMRV and if anything should support them in their research.

What a pity the media doesn't have more such coverage on both these illnesses there is so much science out there that needs to be disseminated such as the Insitute of Medicine Workshop on the State of the Science with Lyme Disease and other tickborne illnesses their presentations are still available on their website and leaves those listening to them in no doubt as to the complexities of all tick borne illnesses - the inadequate testing and the ability to develop chronic illnesses.

Thank you CBS you have done well with your coverage of ME/CFS developments of late but more needs to be published about Lyme Disease as the science emerges

[99rrpj]

Thank you, CBS News for giving some much needed attention to this terrible illness--Chronic Fatigue Syndrome. I am a 36 year old man who got CFS when I was 29 and it has significantly changed my life for the worse. As the saying goes, "Sunlight is the best disinfectant." The more CFS is covered in the media and brought to people's attention, the more likely we are to get research dollars and possible treatments. My hat is off to CBS News!!

[Patdeerfield]

Thank you so much for doing a story on Chronic Fatigue Syndrome. I found your story to be very well-balanced and the new research is very promising. Thank you for stating, once and for all, that this is real. In reality, that should no longer be an issue, but since it seems to be, thank you for clarifying once again. I sincerely hope that you continue researching and reporting on Chronic Fatigue Syndrome. It is something that has been neglected for so long and we, as patients, really need the assistance of healthy people like you to help us get to the bottom of why there has been virtually no interest in this devastating disease for the last 30 years. I beg you to read the book, Osler's Web by Hillary Johnson for this continues to this day. There is a new human retrovirus discovered by the Whittemore Peterson Institute in Reno, Nevada that doesn't ever make the evening news despite its ability to affect the general public at alarming rates through the blood supply. Please keep looking and digging. There is a big, big story here. You will be rewarded in many ways if you continue your coverage and get to the bottom of what is happening with Chronic Fatigue Syndrome. I thank you so very much.

[Starry1004]

The retrovirus research into the cause of CFS is the same kind of big, big story that caused the belief that vaccines caused autism, which, finally, after many years, was proven wrong.

[fortitude901]

Starry, because it is a big story that there is a probably retroviral connection to CFS, that means it is invalid? A highly illogical opinion. Let the scientists figure this out.

[Lindag10]

Thank God someone actually has given credibility to this illness. I've suffered from a "mild" form of CFS most of my life and even after having it diagnosed I STILL got dismissed by doctors and was treated like a lazy goof off. I often wished the medical people who forced me to return to work and wouldn't give my needs any consideration had to drag my body around for a couple of months. They'd sing a different tune. I could deal with my symptoms with diet, exercise and suffient rest as wasn't as bad as many cases. However, that being said, I still took early retirement from my civil service job in order to survive. My diagnosis was "good news", "bad news". I had chicken pox at age 4 and my body wasn't able to throw off the virus completely so although I never developed chicken pox again, my immune system was damaged and when I am overstressed physically I get herpes sores. And this means nothing to most doctors, it's dismissed as "pychosmatic". Hope they finally get a real test to screen for the disease and give the victims a break.

[jbme]

Thank you very much Katie for a very clear and concise report.

Please continue coverage of all the ground-breaking, long-overdue and long-awaited biomedical research into the true causes, and thereby possible effective treatments at long last, of this neuro-immune, multi-systemic and likely infectious disease.

[jbme]

@Starry1004 - I am not seeking credibilty by commenting here - what a curious assertion. The definition of infectious disease that I am using is readily available to anyone in the BMA Family Medical Encyclopedia - "Any illness that is caused by a specific microorganism". It goes on, "The most important disease-causing microorganisms are viruses, bacteria and fungi. Others are protozoa and worms".

One wonders what your motivation is in trying to discredit others' comments on here.

I said "likely" infectious, and there is a lot of evidence to support that. You yourself pointed out the outbreak in Incline Village. There have been others around the world - the Royal Free Hospital in UK, in Iceland etc. This sounds somewhat infectious don't you think?

The term CFS has been used for many years in US in place of Myalgic Encephalomyelitis, which means that anyone with ME in US has the label CFS. ME was well-defined by Melvin Ramsay in the 1950s and has been classified as a disease of the nervous system (neurological) by the World Health Organisation since 1969 and its alternative name at WHO ICD-10 G.93.3 is Post-Viral Fatigue Syndrome. The term CFS was later annexed to that and is not to be confused with Chronic Fatigue, which is a merely symptom of many types of illness.

So you see that CFS (ME) has long been known to be post-viral and many viruses have been associated with it over the years - some mentioned in other comments here. The puzzle is - if it is not just a single hit and run damage-causing virus, why the chronic and often variable nature of the disease and how does it become multi-systemic in its effects?

Retroviral involvement makes a lot of sense to me as someone who has no background in science or medicine, just 19 years experience of ME (CFS). No scientist has drawn conclusions yet, but science means knowledge - we never will acquire the knowledge without research - science is about being open-minded to new ideas and exploring new discoveries further.

What motivation would any genuinely ill person have for not wanting that line of enquiry into their disease fully explored? I understand the fear that people with CFS (ME) may suffer social stigma by the disease being thought to be infectious, but the cost of ignorance is far, far higher, to individuals, including the children, who are already sick and disabled by this disease, and to society as a whole.

That is my opinion and I am entitled to express it.

[Starry1004]

http://www.sciencedaily.com/releases/2010/10/101012151246.htm
This is one of many links discrediting the link between XMRV and chronic fatigue syndrome. I do want every line of enquiry explored, but it is always dangerous to spread information as "truth" when it is not. I do agree that CFS is a neurological illness and hopefully, researchers will find a cause, whether it be bacterial or viral, etc. It makes more sense to me that no one viral agent is responsible. I also believe that many factors have to come into play, be it environmental, viral, heriditary and stress related. No one wants answers more than me, but XMRV is NOT the answer.

[Starry1004]

jbme- I don't know where you are getting your info or if you are affiliated in any way with the Mikovits study, but I have done very thorough research and haven't come to the same conclusion. Also, the XMRV, being a retrovirus, would be spread in the same way that HIV is spread, which would not be possible in my situation.
I would like to know what your feelings are on the recent research.

[jbme]

@starry1004 - I am not affiliated with any study and not a scientist or doctor - I am just someone whose interest in all the research stems from 19 years of ME (CFS). You and I have come to different conclusions from our reading of the data available - there's no problem with that as far as I can see - in my case I simply want the scientists to be allowed to continue with their various lines of inquiry into ME/CFS and other neuro-immune diseases and I want the media to report on it with fairness and accuracy, as Katie has done here.

I do have faith in the abilities and integrity of Dr. Mikovits, among many others, including Dr. Alter. I am also very grateful to Dr. Klimas, mentioned in this article, for her work over the years.

As for spread, or transmission routes, of retrovirus, XMRV (MLVs) need not be exactly the same as HIV - the other retrovirus known to infect humans is HTLV-1 - lymphoma and leukaemia.

Have you seen the research on macaques? This showed the retrovirus moved quickly from the blood to infect almost every organ in the body. You know that XMRV was first discovered during research on aggressive prostate cancer don't you. Nevertheless, blood is a possible route of transmission and people with CFS are now banned from donating blood.

You know that the NIH/FDA/Harvard study showed evidence of MLVs in 7% of healthy controls, some of whom were blood donors. Many people with CFS have also donated blood over the years, not realising their disease involved "active" infection and that they may putting recipients at risk. It is possible (I would say likely - remember I am only a lay-person) that one can be infected with the retrovirus without showing symptoms, like being HIV-positive without developing AIDS. It also looks as though the retrovirus is activated/reactivated by other viruses, which to me makes sense of the usual post-viral onset of CFS, and how in some people, the severity of their symptoms seems linked to recurrent viral infections and other insults to the body and immune system, such as chemical exposure.