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Adrienne Dellwo

CDC's Chronic Fatigue Syndrome Research Changing Course?

By December 7, 2012

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The CDC has announced that it's looking into chronic fatigue syndrome (ME/CFS) subgroups in the hopes of improving treatment options, discovering the underlying physiology, and nailing down a case definition.

If you're familiar with the CDC's history of ME/CFS research, you might take this announcement with a massive grain of salt. You might also be tempted to spit at your computer screen and utter a few choice words. However, this time, things just might be different.

For those unfamiliar with CDC-ME/CFS history, the organization has focused on one psychological and "biopsychosocial" factors while ignoring the physiological. Patients, advocates and ME/CFS researchers have long called for change and believe the CDC has done considerable harm to research efforts by muddying the waters with their approach and with an alternative case definition. Suffice it to say that it's been a long, ugly fight.

So why is this CDC study different? Instead of using its own researchers and its own definition of the illness, CDC is going through seven ME/CFS specialists and their treatment centers. These aren't fly-by-night or biopsychosocial centers, either - they include Nancy Klimas' Center for Neuro-Immune Disorders, Charles Lapp's Hunter-Hopkins Center, and Dan Peterson's practice in Nevada. (Again, for those who aren't familiar with these names, these are some of the top researchers into the physiology of ME/CFS and they've spoken out against the CDC's previous research.)

As for the controversial inclusion criteria, the CDC says anyone diagnosed at one of these seven centers is eligible - meaning they're using the clinical definitions of the doctors who actually know what they're doing.

Why Subgrouping is Important

ME/CFS research, even when done well, is plagued with inconsistency. A treatment appears promising in one study only to be found ineffective in another. Nothing seems to work for a substantial number of people.

Many researchers believe the reason for this is that the term ME/CFS actually covers multiple similar but separate illnesses that each need their own treatment approach. Researching them all in one lump doesn't account for these different subgroups, which means it's all doomed to finding nothing conclusive.

The belief is that, by defining subgroups based on physiological differences, research will start to provide better answers. We could identify treatments more effectively, and we should be able to get a better understanding of what's behind the illness(es.)

Here's more information from the CDC: Multi-site Clinical Assessment of Chronic Fatigue Syndrome.

Let's hope this is a change of direction for both the CDC and for the millions of people who need answers about their illness.

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Comments
December 7, 2012 at 9:33 am
(1) DFWmom says:

It was exciting when Obama actually said the words “chronic fatigue syndrome”, but disappointing that he didn’t mention anything about primary juvenile fibromyalgia. However, there is a lot of overlap between the illnesses, and it is my hope that inquiry into CFS might produce information relevant to fibro treatment. I share the DEEP frustration along with others that all the fibromyalgia research seems to focus on how wonderful therapy is — cognitive therapy, physical therapy. When the patient tries therapy and does not improve (as nothing was ever done to resolve the underlying illness), the doctor then blames the patient . “Well, you must not be doing it right”.

This new study by the CDC is promising, in that it appears to be looking at some of the physiological markers of the disease, which can include, for fibromyalgia, blood pressure issues, cognitive issues, sensory issues, gastrointestinal issues, glandular swelling, changes in muscle tissue, genetic markers, and on and on. At least some of these seem to overlap with CFS. There is so much physiological evidence, it has been deeply frustrating not to see a greater effort to fit the puzzle pieces together, to get a more complete picture.

December 7, 2012 at 5:31 pm
(2) Margaret Golby says:

Sorry Adrienne but the link is inaccessible to me…. I’m in the UK….. could you offer any alternative access points ?????

Guide Response: Sorry about that! The CDC site is back up, so the link is updated now. ~Adrienne

December 7, 2012 at 7:09 pm
(3) Karen says:

Sorry, but I’ll believe it when I see it at the local physician level. I have run into almost none who actually believe that fibromyalgia, CFS, etc exist. Because it hits women in such higher numbers, they don’t even consider ti as anything other than a neurotic disorder. Even if they don’t say so up front, those who don’t believe it exists don’t look you in the eye when you bring it up and change the subject.

Until they identify some sort of biomarker, lab test or whatever, that screams fibromyalgia as a the only differential diagnosis there are many medical dinosaurs out there (overwhelmingly male) who will continue to blow us off. As a former ICU nurse, I’ve worked with legions of them and they train the new ones in their ways.

December 7, 2012 at 8:23 pm
(4) Nitalynn says:

If they really want to “be in the hunt” and not be religated to the sidelines or worse blamed as a culpret for the years of suffering and by what I am sure history will label them when the truth does one day come out I would assume they do need our trust. If you have any contacts there I would suggest an apology would be the first order of the day. I know I personally would not be interested in any studies directly involving the CDC until one is forthcoming. I know there is a new regime there but at the same time we were wronged by not just a hand full of doctors but an institution the was supposed to provide answers for just such as we are experiencing. On the “first do no harm” scale they are now sitting at about a -20, up from a -150 when I was first diagnosed with this condition. An apology is the very least I expect before I will ever even consider them a positive force in our future cure. Am I bitter? Yes but I have grown old suffering from this disease. If the cure were to be found tomorrow I might not see it implimented in my lifetime.

December 7, 2012 at 10:38 pm
(5) sue smith says:

I think we will seeing many more illnesses like CFS with synthetic foods and vitamin deficiencies – Hope someone realizes the seriousness of CFS!

December 8, 2012 at 4:12 am
(6) Nancy says:

Nitalynn, I have reached a point that I’m beginning to doubt I’ll be around when and if a cure comes along. I’m 72 years old and I’ve had CFS/FM since I was 38. I also have developed arthritis, MCS, diabetes 2, pelvic prolapse, high blood pressure and cholesterol, low thyroid and lots of other symptoms that have left me about 95% disabled over these last 34 years.

I have to use a wheelchair when going to my medical appointments, and in the last couple of years, I’ve had about 15 appnt’s. and two hospitalizations. Incidentally, the CFS/FM had a sudden onset, flulike and I developed diabetes in spite of the fact that I wasn’t overweight or obese. I am 5’4” and weighed 153 when diagnosed, now weigh about 140.

The CDC stuff sounds like a positive step but it’s too late to do me any good I’m afraid. I’ve been waiting since 1978 for help.

December 8, 2012 at 7:07 pm
(7) Lee says:

We need some investigation into structural anomalies of the neural tube, and a careful look at all the problems that can cause a myelopathy – or disorder of the spinal cord. Neurosurgeon Robert Bray has recently been discussing something called T.E.A.M. – basically an anomalous growth of blood vessels in the thoracic spine that reduces blood supply to the spinal cord. It does not show on usual MRI. It seems to predominate in women, and he says it may not rare. Check out his site.

March 24, 2013 at 6:35 am
(8) Cat says:

This is awful. There are no CFS subgroups. There are separate illnesses. They are desperately trying to hide the problem they created when they invented CFS.

Not like AIDS or various cancers or MS are subgroups of fatigue (CFS) is it?

If people dont have neuroimmunological abnormalities they cant have ME.

March 16, 2014 at 7:07 pm
(9) Nancy R says:

Especially for Nancy!

Please don’t give-up Nancy! I hope you see this post!!! It seems I have been sick most of my life. I had to quit school at 20 and have devoted most of my life since then to figuring out how to get better. I am 53 now. Found an article on candida and thought it was just that for over 35 years. After being basically too sick to continue working, i quit my job, moved and got married, my marriage failed, I never liked to complain about being sick, i just tried to do my best. anti-candida diets, no sugar, low carbs…. but i wasn’t functioning well, and that caused a LOT of turmoil and anger in the marriage.

After moving a total of 4 x in 4 years during the separation and divorce i became extremely non-functioning and recluisive. I was sick and depressed, and my family was mad at me, calling me lazy and selfish behind my back. MY FAMILY! I even went to a Naturopath and started getting VIT C IVs, but it still wasn’t enough. I have done food grade hyrodgen peroxide, Acupuncture, Cognitive Therapy, massages, herbal therapy…. and it just made no freaking sense to me!!! i finally decided to contact a medical medium. I had HAD IT with DRs. What I learned liberated me. I will give you full program here.

What he said, was that I had the Epstein Barr Virus, and I got it in a vaccine as a baby. I wasn’t breast fed, so that made my immune system weak and succeptable to pathogens. The next part is extremely important!!!

He said no animal products AT ALL! no red meat, chicken, fish, eggs, butter or ghee. NOTHING. The animal fat was oxidizing and feeding the virus. My body was inflamed with it. (check next post, have to divide this up)

March 16, 2014 at 7:16 pm
(10) nancy says:

I was in bad shape. I had reached the point of sleeping 12-14 hours and still used caffeine to “wake up”. Everybody was mad at me. I had always been the strong one, esp when i was younger, but that had severely diminished over the last 25 years…. although I tried to keep up the front! I tried hard. I took lots of herbs, doing things the natural way…but it just wasn’t enuf. I balked at giving up my meat and eggs…. i thought i could alkalize with my meat… but i was too sick to really prepare good meals, and juice like i wanted to… OH… and one MORE thing. NO GRAINS. NONE! Especially Wheat and corn. yes, you heard me right…. and yes, you will live… and yes you CAN DO IT!

If you are sick and tired of being sick and tired you will give this a shot! Here is the supplement program:

NATURES ANSWER alcohol free LICORICE tincture….
3 droppers full 2x daily
NATURES ANSWER alcohol free CATS CLAW tincture…
3 droppers full 2 x daily
EIDON IONIC ZINC Liquid Concentrate
2 droppers full 2 x daily
L-LYSINE
2000mg 2 x daily
HAWAIIAN SPIRULINA
1 TABLESPOON DAILY… working up to 2 TABLESPOONS DAILY
INDIBLUE WILD BLUEBERRY and coconut juice (Indiblue ONLY)
This is a special breed of blueberries that REPAIR THE
NERVES! This is extremely important.

suggested eating plan: A smoothie in the a.m. (ji use a green superfood supplement, vegan protein powder, berry mix, banana and my INDIBLUE juice, ice and a little stevia, and sometimes, cilantro and/or spinach and/or almonds or almond butter!)

for lunch a salad is suggested… but I don’t think ive ever quite done this right….. lots of nuts and beans, for those are the vegans proteins.

For dinner: A baked potato and another salad. I have been experimenting with making a lot of bean soups. This is all pretty new to me too.

March 16, 2014 at 7:18 pm
(11) nancy says:

I am determined to spread the word. Please share this. This program was prescribed for me, but i’m sure that it woudn’t vary that much for anybody else. You could certainly add things, like alkalyzing drops…probiotics (for sure) and immune modulating herbs as well as coffee enemas. Yes, surely your liver is sick, i almost forgot … Liposomal Glutathione! This is the body’s main antioxidant and if i don’t take it, i I am in a horrible mental and physical cloud of oblivion and fatigue. You may want to experiment for yourself. But I encourage you do to do your own research!

No matter WHAT this is caused from… ALKALYZING and nutrition is the cure! MASSIVE AMOUNTS OF NUTRITION will be needed. If you have the resources, I highly recommend juicing. At least once a day.
GERSON CANCER TREATMENT calls for 13 glasses of freshly squeezed masticated juice a day, plus up to 5 coffee enemas a day.

I will add my email address if you need extra help or would just like to connect. I’m sure i’ve left out something. I pretty much figure I should start a facebook support group, but I haven’t done it yet. It has only been 2 mos for me on this program. The first month all i could do still was sleep, but i felt so guilty all the time. That is still a huge problem, but there comes a time when you have to say ‘HEY…. THIS IS REAL, WHETHER YOU LIKE IT NOT AND I AM IMPORTANT!” “IN FACT… CONSIDER THE FACT THAT I AM JUST AS IMPORTANT AS YOU ARE!”

In the meantime, be kind to yourself. Beating yourself up for being sick just exacerbates the problem!

BIG HUG ALL!!! And no…. it doesn’t happen overnight… but it HAS to happen!!! DISEASE CANNOT LIVE IN AN ALKALINE ENVIRONMENT.

ALKALIZE FOR LIFE!

and much, much love!!!

Nancy

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