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Sick and tired of chronic fatigue syndrome

Original post made on Dec 2, 2010

Amberlin Wu, who has suffered from chronic fatigue syndrome for 15 years, is sick and tired of being sick and tired.

Read the full story here Web Link posted Thursday, December 2, 2010, 1:18 PM

Comments (79)

Posted by A. Reader, a resident of Old Mountain View
on Dec 2, 2010 at 1:58 pm

There could be almost unlimited number of reasons for Chronic Fatigue Syndrome, including Cell Towers and New PG&E Meters.


Posted by A. Reader, a resident of Old Mountain View
on Dec 2, 2010 at 2:13 pm

""It's so frustrating," says Wu, who says doctors have accused her of faking her disease and says hospitals have denied her care, because they know insurance companies won't pick up the tab for CFS-related treatment."

Yes, if insurance companies picked up the tab, then hospitals would love to treat you to death! It is called Open Medicine Institute because if you got the money, it would be open-ended as far as the limit of treatments go, no matter how meaningless these treatments are.


Posted by A. Reader, a resident of Old Mountain View
on Dec 2, 2010 at 2:32 pm

"Patients diagnosed with CFS report frequent sore throats, allergies or sensitivity to food, irritable bowels, intense migraines and vertigo."
Now if you zoom in on one of those medications she is taking, the label says, "May Cause Dizziness."


Posted by A. Reader, a resident of Old Mountain View
on Dec 2, 2010 at 5:01 pm

Well, at least CFS provides steady employment for Ms. Lua Finau at the expense of Ms. Amberlin Wu's parents' retirement fund. I wish them all a happy ending.


Posted by caren, a resident of The Crossings
on Dec 2, 2010 at 6:20 pm

The comments listed here so far are ridiculous, and is in large part why people with Chronic Illnesses have such a hard time, both in the community and with doctors. I have had CFS for 20 YEARS. AND I ASSURE YOU IT IS VERY REAL. There are an estimated 2 1/2 millions sufferers of this in the US. I was an athletic active 24 year old when I got mono one winter, and never recovered. I have been bedridden for months and year on end, but was at times able to work partitme at Stanford Hospital. I am very well acquainted with Dr Kogelnik, as I have been under his care, with the clinical trial at Stanford. This article here references the one he is in the middle of writing, which involves the stanford work. These patients (WE) have many viral illnesses, bacterial illnesses, sleep disorders, neurological disorders etc etc. Yes it IS complicated and baffling and thank god for doctors like Kogelnik and others who recognize that patients have a real illness and are not making it up. Shame on the idiots who wrote these comments. ps I am finally conquering this horrible illness after years of countless doctors, treatments, disabilities, etc. So there is actually some hope. I plan on attending the CFS meeting group mentioned here.


Posted by A. Reader, a resident of Old Mountain View
on Dec 2, 2010 at 6:24 pm

Now that Palo Alto Medical Foundation (PAMF) is laying off staff due to financial shortfalls, maybe they can come with some kind of screening scheme for CFS (a la El Camino Hospital), and then do some awareness marketing. Maybe some TV commercials, etc. (a joint project with pharmaceutical companies, off course). Obviously, they need to use the term "spectrum" here because not everyone "suffers" from "fatigue" to the same degree.


Posted by caren, a resident of The Crossings
on Dec 2, 2010 at 6:41 pm

Thank you to Nick Veronin for writing this article and thank you to the Voice for publishing it. This disease has been discussed dozens and dozens of times in newspapers and magazines, and on Oprah etc. One good example of a patient with this illness is the woman who wrote "Seabiscuit". Her story and interviews were also in the news a lot a few years ago.


Posted by Phoebe Snowden, a resident of another community
on Dec 2, 2010 at 10:17 pm

CFS is real, it's now linked to the AIDS-like infectious retrovirus XMRV, so any one of you morons with your negative comments could contract it next. In fact, you might already have XMRV as studies have found that 4-7% of the healthy population is infected and don't know it. It's also been linked to prostate cancer.

The reason that you don't hear about people who can't afford care for CFS is because they die from other diseases (just like people with AIDS do) or they commit suicide. It's a devastating disease-like a combination of AIDS and MS. The laughable name CFS was created by the government to minimize the disease at a time when their funding was stretched to the limit by AIDS in the 1980s. Gee, it worked pretty well, since you people feel comfortable mocking a patient who can't even walk to the bathroom.

In conclusion: infectious disease, linked to cancer, causes severe immune dysfunction, will destroy your life, no treatment, no preventative measures in place, and the blood supply is likely contaminated. But don't worry: it's called "Chronic Fatigue Syndrome" so it can't be all that bad, right dumdums?

Hang in there Amberlin: this charade can't go on forever. Thanks for trying to set the record straight about this disease.




Posted by Kathryn Stephens, a resident of another community
on Dec 3, 2010 at 12:48 am

You hang on, Amberlin, HOPE and UNDERSTANDING are on the way! The patient driven and funded Ad from the ME/CFS Worldwide Patient Alliance is on the way! It will let the public know the terrible danger they are in from this XMRV. If up to 7% of the population have been infected, that means 21 MILLION are either sick with it or are carrying it around in their bodies. This is tragic, and the blood supply is in great danger because our government is playing the same games they played with HIV...any of you ignorant ones ever see "And the Band Played On"?

If you're open-minded and caring and have empathy for those who are suffering as severely as Amberlin, go to:

www.mcwpa.org

If you REALLY, REALLY care, go to the Facebook Cause page:

causes.com/causes/511536

Bless your doctor; he has opened his eyes and his heart. May he find a way to help you become stronger and fight this disease tooth and nail. Yes, anti-retrovirals can make you have reactions; however, they can also get you up and about and may be the only thing that will. HIV patients do very well on them! Look at Magic Johnson!

May your days of being bed-ridden be numbered, Amberlin, and may the wonderful scientists at the Whittemore Peterson Institute (wpinstitute.org) find answers for all of us!


Posted by A. Reader, a resident of Old Mountain View
on Dec 3, 2010 at 5:15 am

XMRV is the next Big Thing!


Posted by lemon, a resident of another community
on Dec 3, 2010 at 7:34 am

@john the man

I have CFS and my parents don't pay for it. They are dead. I live in poverty and have spent times homeless. Now you have heard of one person who can't afford to be sick.

Disease is not a social construct.


Posted by Compassion, a resident of Cuesta Park
on Dec 3, 2010 at 3:12 pm

How dare these smug no-it-alls try and ignorantly suggest something is fake simply because they lack knowledge of the facts or lack the ability to understand the facts. Reminds me of the anti-medical pot crowd. Same ignorant and closed minded ilk.


Posted by A. Reader, a resident of Old Mountain View
on Dec 3, 2010 at 8:44 pm

Like I said, XMRV is big time, and must be monetized.


Posted by Know-It-All, a resident of Old Mountain View
on Dec 3, 2010 at 8:49 pm

"How dare these smug no-it-alls try and ignorantly suggest..."
It is "know-it-all."


Posted by HoleInTheHead, a resident of Old Mountain View
on Dec 3, 2010 at 8:53 pm

"Same ignorant and closed minded ilk."
I am open-minded.


Posted by K in the UK, a resident of another community
on Dec 4, 2010 at 2:54 am

Hi,

I'm in England. I also have CFS, and I have tested positive for XMRV.

XMRV is a special kind of virus, called a retrovirus, like HIV which causes AIDS.

XMRV was first found in cancer patients.

This is why people with CFS have been banned from donating blood.

In England, the situation is bad for CFS patients (CFS is also called ME over here).

Here's an example. Sophia Mirza got CFS when she was 26. She was bedbound. The doctors said it was all in her mind. She was sectioned. (I don't know what you call it over there, but being "sectioned" means the police, the doctors and the social welfare workers kicked down her door and took her against her will to be locked in a psychiatric hospital). She got worse, and she died aged 32. After she died, her body was examined by two neurologists. The result showed inflammation of the spinal cord. She had been telling the truth all along. She really was physically ill.

This was 5 years ago. If you go to youtube and search for

Late M.E. sufferer Sophia Mirza - vid 2

you can see the local TV news report.

We desperately need funding for research into XMRV.


Posted by Know-It-All, a resident of Old Mountain View
on Dec 4, 2010 at 11:15 am

But Wiki says, XMRV is a gamma-retro-virus that was first described in 2006. XMRV has been isolated from human biological samples. Several reports have associated the virus with prostate cancer, and chronic fatigue syndrome (CFS) but other reports do not find an association. It has not yet been established whether XMRV is a cause of disease.


Posted by Know-It-All, a resident of Old Mountain View
on Dec 4, 2010 at 11:18 am

"I don't know what you call it over there..."

Here, it is called "Involuntary Commitment." In the United Kingdom, the process known in the United States as involuntary commitment is informally known as "sectioning," after the various sections of the Mental Health Act 1983 (covering England and Wales), the Mental Health (Northern Ireland) Order 1986 and the Mental Health (Care and Treatment) (Scotland) Act 2003 that provide its legal basis.


Posted by Amberlin, a resident of Old Mountain View
on Dec 4, 2010 at 11:49 am

For those interested in coming to the CFS meetings, please contact Rochelle Hall at cfsbayarea@yahoo.com.


Posted by Amberlin, a resident of Old Mountain View
on Dec 4, 2010 at 11:54 am

Thank you so much to Nick Veronin and The Voice for taking this bold step on behalf of the ME/CFS community. With deep appreciation, Amberlin Wu


Posted by Friend, a resident of Old Mountain View
on Dec 4, 2010 at 1:05 pm

I am saddened by the ignorant comments that follow such a wonderful article. How easy people can judge a person they have never met. Shame on you all who speak ill of things they don't understand. I have seen this wonderfully kind person helplessly fight this unwanted CFS. She fights with grace and shares her experience in the hope that ignorance will no longer be a road block. Fight on Miss Amberlin!


Posted by Matthew, a resident of another community
on Dec 4, 2010 at 1:55 pm

Laura Hillenbrand who wrote Seabiscuit, also just had a recent interview in the Washington Post on her disease.

Web Link


Posted by BV333, a resident of another community
on Dec 4, 2010 at 2:12 pm

Wow - I've been reading Amberlin's blog for a while where she says that people don't believe she's ill & many say CFS sufferers are faking it, but to see it in action in these posts!! Lazy, my A**. Amberlin has a master's degree and completed a greuling internship to become a licensed therapist (even while she was sick). Lazy people don't go through that,and it's ridicuous to think someone would do that and then see if they could live off the system or their family's retirement. Amberlin was the director of a project that helped hundreds of teen girls in Mountain View. She was & is a strong, determined woman, and when they find effective treatments or a cure for her, I have no doubt that she will be back serving this community.


Posted by BV333, a resident of another community
on Dec 4, 2010 at 2:18 pm

Wow - I've been reading Amberlin's blog for a while where she says that people don't believe she's ill & many say CFS sufferers are faking it, but to see it in action in these posts!! Lazy, my A**. Amberlin has a master's degree and completed a greuling internship to become a licensed therapist (even while she was sick). Lazy people don't go through that,and it's ridicuous to think someone would do that and then see if they could live off the system or their family's retirement. Amberlin was the director of a project that helped hundreds of teen girls in Mountain View. She was & is a strong, determined woman, and when they find effective treatments or a cure for her, I have no doubt that she will be back serving this community.


Posted by the_bf, a resident of another community
on Dec 4, 2010 at 2:56 pm

Wow, such a moving, brave and personal article taking a strong advocacy position for CFS. Althought it's disheartening to see the initial flood of negative comments, it's wonderful to see the tone changing and people beginning to understand and be more supportive. This condition can be so hard to endure, it's wonderful to see someone holding up a light and letting others sufferers know they're not alone. It's so important to raise awareness, push back the veil of ignorance, and work towards a cure for this awful condition. Be a light!


Posted by HoleInTheHead, a resident of Old Mountain View
on Dec 4, 2010 at 3:00 pm

Then call it myalgic encephalomyelitis (ME), or something other that Сhronic Fatigue Syndrome (CFS). Because most people are chronically sleep-depraved and fatigued. I personally prefer myalgic encephalomyelitis because nobody can pronounce it and knows what the he** it means.


Posted by Dave, a resident of North Whisman
on Dec 4, 2010 at 4:40 pm

Good job Amberlin for telling your story! I am also very grateful to Amberlin and others for starting, and continuing a wonderful support group. Our war stories may seem repetitive, and our insights modest, but it's really nice to be reminded that we are not alone in our struggles.


Posted by Activist, a resident of Old Mountain View
on Dec 4, 2010 at 4:54 pm

Interested parties may watch/read more stories on Amberlin Wu here: [Web Link] [Web Link]


Posted by Katie Johnston, a resident of Cuesta Park
on Dec 4, 2010 at 5:09 pm

CFS is a horrifying disease! People who do not "believe" are cruel and uneducated.

WE NEED TO HELP THESE PEOPLE WITH CFS!! what is wrong with our society to leave people suffering like this?! PLEASE HELP THEM!


Posted by Know-It-All, a resident of Old Mountain View
on Dec 4, 2010 at 5:13 pm

There are "selective" quotes by several posters regarding this story. They seem to be coming from this Newsweek article: [Web Link#]


Posted by Robbie K, a resident of Cuernavaca
on Dec 4, 2010 at 5:30 pm

*****NOTE TO READERS: THOSE FIRST FEW MEAN COMMENTS WERE LEFT BY ONE PERSON, not multiple people. I am here with my roommate and he and I just got into a big argument about it. He just posted several times. I can't believe that I am even writing this, but I think that people should know. This forum needs a little more filtration on the comments.

I am so sorry for Amberlin. What a brave girl. All of these people with this terrible disease are so brave. Is there somewhere that we can donate to for research?

PS. I am looking for a new roommate as of today!


Posted by Robbie K, a resident of Cuernavaca
on Dec 4, 2010 at 5:32 pm

*****NOTE TO READERS*****


THOSE FIRST FEW MEAN COMMENTS WERE LEFT BY ONE PERSON, not multiple people.


I am here with my roommate and he and I just got into a big argument about it. He just posted several times. I can't believe that I am even writing this, but I think that people should know. This forum needs a little more filtration on the comments.

I am so sorry for Amberlin. What a brave girl. All of these people with this terrible disease are so brave. Is there somewhere that we can donate to for research?

PS. I am looking for a new roommate as of today!


Posted by Amberlin, a resident of Old Mountain View
on Dec 4, 2010 at 8:43 pm

Robbie, Thank you so much for setting the record straight. I think those first few comments could be quite heartbreaking to many in the CFS community.

For those asking about how to contribute to CFS, Dr. Kogelnik is establishing a non-profit that will help fund CFS research. His website is Web Link. Other organizations that one might consider are invisiblediseases.com and cfids.org.

my cfs blog: bealightcfsawareness.blogspot.com


Posted by Zoe Kunstenaar, a resident of another community
on Dec 4, 2010 at 9:05 pm

I went to Grad school with Amberlin Wu ten years ago. She was one of the least lazy/self indulgent people I've known. Bright, active, and passionate about helping the world. She used to teach swing dancing! Hardly the way the critics of this article portray her...

As far as the comment regarding "only people who can afford this, get this"... I've known of people who had no resources and got CFS. They end up on state disability, stuck in tiny little apartment rooms, or in hospitals on welfare...

I'm grateful that Amberlin has parents with enough resources to support her in this devastating illness.


Posted by Know-It-All, a resident of Old Mountain View
on Dec 4, 2010 at 9:33 pm

For those interested in more comments on XMRV/CFS, check out this link: [Web Link]


Posted by Dave Barry, a resident of another community
on Dec 4, 2010 at 10:29 pm

My mom had CFS for years! Still probably does, but her symptoms and suffering are almost totally non existent now! She finally found a system that works for her and the pain and fatigue are in a complete remission! She found it in a regiment called the Lightening Process if anyone has CFS or knows someone who does, there's been amazing results for a great many!


Posted by Know-It-All, a resident of Old Mountain View
on Dec 4, 2010 at 11:52 pm

The Lightning Process (LP) is 3 day training program designed by osteopath Phil Parker (Principal of the European College of Holistic Medicine 1997 - 2008, Director of The Phil Parker Training Institute 2008–present).

Developed in the late 1990s by Phil Parker, The Lightning Process "has claimed" to be effective in the treatment of Chronic Fatigue Syndrome as well as other auto-immune conditions, neuro-behavioural disorders and neurological conditions.

See [Web Link]


Posted by Clayton Cook, a resident of Old Mountain View
on Dec 5, 2010 at 12:18 am

Somebody using the name Thom wrote: "I'm still wondering how or why this is even printed?"

Imagine having a severe flu, not necessarily the upper-respiratory stuff, but the heavy head and painful dysfunction throughout your body. Then add that physical movement makes you sicker, and resting does not replenish your energy. Then add the gradual weakening of your immune system until it bottoms out completely and you have to worry about catching a cold in case it kills you. And none of your symptoms respond to any known medical treatment, and everyone thinks you're faking and they rain derision on you, including doctors.

For how long can you imagine living with that? After a few months, your muscles and joints hurt because you can't be active enough to keep them conditioned. So. Say you caught it twenty years ago. And now it's today. Most doctors are still trained that CFS is not a medical condition, and everyone else thinks it's a joke. So you've basically just been curled up in a ball of severe untreatable flu and body pain for the last twenty years, and nobody but your very closest friends and family have even cared.

It's a disease that destroys lives. Once in a while, somebody writes a little article about it.


Posted by cdub, a resident of another community
on Dec 5, 2010 at 12:54 am

It takes tremendous heart and courage to be able to make your life so public. People can be so unkind when they are anonymous. Thankfully, there are more kind people out there and thanks to those others for writing back to support Amberlin and CFS in general. It is such a hard disease that most ill people don't have the health, energy or resources to fight to make the disease more visible. Amberlin and the few others like her are pioneers. I'm sure one day, because of the work being done now to raise awareness and support research, this disease can be solved.

But really, what kind of [Portion removed due to disrespectful comment or offensive language] writes such hateful stuff and then comes back and writes multiple times over a period of 4 hours and while doing so makes up different names! Sounds like he's going to have a pretty hard life himself [Portion removed due to disrespectful comment or offensive language].


Posted by Reader, a resident of another community
on Dec 5, 2010 at 2:15 am

Thank you to Nick Veronin and the Mountain View Voice for interviewing Amberlin and publishing this article.

As a physician with CFS, I have been on both sides of the stethescope. As Dr. Kogelnik states above, most medical school and health training programs hardly mention CFS. I trained at three well-known medical programs and was not aware how disabling CFS could be until I became ill and could no longer work. Thus, a lot of physicians are still in the dark about the multiple problems people can encounter.

A large part of this is because CFS is still dismissed by some physicians/ researchers as "laziness," "malingering," or "depression" despite up to 70% of people contracting it after a flu-like illness. Most folks who develop CFS are in the prime years of their lives and were previously active and healthy. It is easier to dismiss something we don't understand than to admit we don't know what CFS is and that there is no effective treatment getting at the underlying cause.

Heard of seizures, lupus, and multiple sclerosis? These three illness, among many, were also viewed as pschological illnessess until the advent of more advance tests to show that they were biological illnesses.


Posted by Lin C. Wu, a resident of another community
on Dec 5, 2010 at 11:48 am

I am Amberlin's father. Amberlin is a very intelligent, warm hearted and sociable person. In spite of being ill for so many years, she continues to live a meaningful life with great creativity. Spending most of her time at home or bedside, she continues to reach out to her family, friends, colleagues and the CFS community with good will, humour and compassion. As her Dad and a member of her care taker team, I feel that I have learned to be a better person by taking care of Amberlin through the years. I love Amberlin dearly, and I know she will get well.


Posted by Ann Wu, a resident of another community
on Dec 5, 2010 at 12:03 pm

I am so proud of you Amberlin for using "private pain for public purpose."
For those who wrote negatively…just imagine yourself having the worst flu of your life, and having it never go away.
Amberlin gave her permission for the interview to give respect to those suffering from this illness, so that those who are ignorant of this illness would be educated. For those who don't understand, he or she should try to be more compassionate. Unless we are aware of the suffering, we will not know the ways to help those who are suffering from CFS.
If you want to find out more about the illness, do go to the CFS Support meeting that is being held in your community. Meet the people who have CFS. You will be amazed by their intelligence, their willfulness to live, to be alive, to be helpful, and to be contributing members of their community, even on their sickest day. You will be so inspired by their courage.
CSF needs acknowledgement, support. And most of all A CURE


Posted by Jenni, a resident of Castro City
on Dec 5, 2010 at 12:07 pm

I am appalled at all of the judgmental people on here. How can you begin to criticize when you don't even this woman or her family. If you have not witnessed the effect of CFS first hand, then you have no right to judge. Those of you who do judge obviously don't know someone with CFS or you would know how incredibly real this is. I have a very close friend who has had it for years and I have seen him at his very worst. I have been there when the ambulance had to come and take him to Stanford because his heart was beating 400Xs a minute...unless the EMTs were all lying and in on the big conspiracy as well. I was there when he couldn't go see his grandmother on her death bead (the woman who helped raise him,) and could not attend her funeral because he couldn't even walk to the bathroom. I assure you that the tears that he cried over this were real. I have seen him going through rounds and rounds of antibiotics because of infection after infection. I assure you all of this was real. His mother is unable to help but if she could, I assure you that she would. It is a parent's biggest heartache to see their child suffering. Their well-educated, intelligent child unable to hold a job because of illness. Do not criticize unless you know what you are talking about. My heart goes out to you Amberlin. You are so brave to share your story. Much love and good health to you and your family. You are a true soldier fighting an invisible enemy. <3


Posted by Jenni, a resident of Castro City
on Dec 5, 2010 at 12:09 pm

Bravo Ann. You are an amazing, supportive, loving Mother.
Much love to you and your husband!


Posted by Heather, a resident of another community
on Dec 5, 2010 at 12:15 pm

I've come to know Amberlin and she is one of the strongest people I know. She's become a wonderful artist while battling CFS. See her store on Etsy Web Link
I did not understand CFS so I reasearched it...it's real and it breaks my heart that some do not take this disease seriously. I was also baffled by the negative comments...thank you Robbie for clarifying.
Amberlin, you are a light! Good job for helping so many in your condition! Stay strong!


Posted by Nanuchka, a resident of Shoreline West
on Dec 5, 2010 at 1:13 pm

I suffered from CFS for most of my life. 8 years ago, I was introduced to Dr. Robert O. Young's book, The pH Miracle'. Dr. Young's book, along with one his Certified Microscopists, and his formulations turned my life around.

Healing hasn't happened overnight. Into my ninth year now, my health still isn't where I'd like it to be. But ever since I started Dr. Young's program and became an alkavorian, my health has steadily improved along with my overall quality of life.

Once bed-ridden, I now enjoy a 'normal' life where I'm able to engage in most of the activities that I want to participate in, and my health continues to improve day by day.

I can't say enough good things about Dr. Young and his program. I encourage the subject of this article, and anyone else who wants to improve their health to check out Dr. Young's precepts, and follow his program. Go to www.phmiracleliving.com for more information.


Posted by Know-It-All, a resident of Old Mountain View
on Dec 5, 2010 at 1:46 pm

Note the legal issues:

In 1995, Young (Robert O. Young, author of The pH Miracle) allegedly drew blood from two women, told them they were ill, and then sold them herbal products to treat these illnesses. He was charged with two third-degree felony counts of practicing medicine without a license, but pleaded guilty to a reduced misdemeanor charge. Young argued that he had never claimed to be a medical doctor, that the women had entrapped him by asking to be part of his research, and that he "looked at the women's blood and simply gave them some nutritional advice."

In 2001, Young was again charged with a felony in Utah, after a woman suffering from cancer alleged that he told her to stop chemotherapy and use one of his products to treat her cancer instead. Subsequently, when an undercover agent visited Young, he allegedly analyzed her blood and prescribed a liquid diet. The case was taken to preliminary trial, but charges were dropped after the prosecutor stated that he could not find enough people who felt cheated by Young. Young himself dismissed the arrests as "harassment," and stated that they were a factor in his move to California, "in part because the legal climate here is more tolerant for dietary researchers such as himself."


Posted by Nanuchka Zoranovich, a resident of Shoreline West
on Dec 5, 2010 at 1:59 pm

P.S. If Amberlin Wu or anyone else is interested in participating in Dr. Young's program after they review his precepts and what the program entails, you can contact me on Facebook. I included my last name in making this post so you can find me.

The key to staying on Dr. Young's program is having great recipes to make being an alkavorian enjoyable. I am willing to share both my own recipes that I've created, and those that I've found tasty and easy to make. That combination is hard to find, and without the ability to do this easily day in and day out you won't get the improvement you want.

I've made a point of making being an alkavorian as tasty and easy as possible.


Posted by Franky, a resident of Castro City
on Dec 5, 2010 at 7:17 pm





Amberlin, being a highly educated woman, who also helped the Mountain View community, is inspirational on epic levels.

I myself have CFS, and I too have earned a PhD. I also have another friend with CFS who is an MD. There are countless people who were very hard-working, driven people, eager and ambitious to spend a life serving communities and building successful careers. Now however, CFS has stolen our dreams alongside our health. We do need need enormous help. Please, help us.

Once we do finally find a cure, or even just a treatment, just stand back and watch what incredible magic and life we will put back into the world!





Posted by Another Heather, a resident of another community
on Dec 6, 2010 at 7:29 am

My love and support goes out to all of those who suffer from CFS, and to all of those who continue to help and care for them along the way. One of my very dearest friends has suffered from CFS for years, and his courage, strength of heart and undying creativity in the face of such a terrible disease has been an inspiration to me in my own life. Never-mind the nay-sayers (seems like there's not so many here as it seemed, anyway) and please know that there are so many of us in the world that love and support you.

Amberlin, we haven't met, but I have heard so much about you from my friend. You have been such a source of hope and strength for him, and in telling your story I sincerely hope that others who may feel completely alone in this will find hope too. Thank you for doing this interview, and for all you do in the community.


Posted by CFS Facts, a resident of another community
on Dec 6, 2010 at 8:05 am

Although much fun has been poked at patients over the past quarter-century, this disease is no laughing matter to the 17 million people worldwide who suffer from it.

Fifteen years ago, in 1995, Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, testified to Congress that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."

Miami's Dr. Nancy Klimas said last year "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.", noting that she's seen patients who "came to a doctor with Chronic Fatigue Syndrome; they left the doctor with Post Traumatic Stress Disorder" due to the verbal abuse they received for daring to think they were physically ill, not just depressed. Without appropriate treatment -- or, worse yet, with inappropriate treatment such as being forced to exercise -- some of these patients become permanently bedridden, yet are repeatedly denied Disability benefits on grounds they "just need counseling".

One of our long-time activists suggests that a large number of the chronically homeless may be CFS patients who have been denied benefits and sold everything they owned trying to stay alive. I have no spouse, no siblings, no children -- my elderly parents, who have their own major health problems, live in a small house in another state and have neither the room nor the physical ability to care for me, so I muddle through alone, which means some days I don't get to eat because I'm too sick to fix even a sandwich. There's no "secondary gain" here, as would be the case with malingering -- just pain and illness and isolation because I'm too ill to leave home.

This is the devastating effect of the disease with a silly, trivializing name, and I thank you for calling attention to it.

Founder, CFSFacts.org -- dispelling the myths and providing the facts

CFS Facts is also on Facebook and blogging at Web Link


Posted by Joanne Brayden, a resident of another community
on Dec 6, 2010 at 8:31 am

After living with remitting and relapsing Chronic Fatigue Syndrome tempered with fibromyalgia for over 45 years now, I can assure you that the judgmental opinions posted here are heard by those of us suffering with this illness on nearly a daily basis... as often as not from well meaning family, friends and doctors.

I have been referred to a psychiatrist for medical treatment over 25 times and each one of them has referred me back to my regular medical practice after carefully evaluating me and finding I suffer from situational depression caused by the severity of my illness.

The biggest problem is that there is no language to adequately describe the symptoms of chronic fatigue syndrome. Yes, everyone gets tired. Everyone gets dizzy sometimes. Everyone has aches and pains. But most people would be bedridden with the severity of symptoms that characterize a good day for someone with CFS.

It's no wonder so many choose death rather than face an endless supply of bad days and the ridicule this illness hands out. Surviving Chronic fatigue syndrome isn't for sissy's or for those without creativity and hope.

What i find most disturbing is that every time there is new research that provides hope for people with Chronic Fatigue Syndrome and the press takes note and publicizes someone's story... the "it's all in your head" and "if you only tried this remedy" and "if someone didn't take care of you , you would get off your lazy bottom and work" crowd do their best to drown out any hope for those who need it most... the millions who suffer alone in their rooms or in their cars or in a friend or family member's guestroom without much in the way of medical assistance and little public support.

To them I can only say.. Get a life. I am too busy trying to live mine to take the time to educate you.


Posted by CFS Facts, a resident of another community
on Dec 6, 2010 at 9:58 am

Like Joanne, I've had doctors send me to psychiatrists, who have unanimously returned me to the doctor with a letter that says "I have an MD degree, too, and these symptoms are compatible with a physical illness; this patient does not meet the diagnostic criteria for depression."

The doctors don't like to be proven wrong and want me to go to one shrink after another until they finally find one who agrees with them that this patient who smiles, laughs and makes jokes is "merely depressed".

Over their objections, I enrolled myself in a clinical trial for an experimental medication which helped me far more than their suggestion that I could think myself well.

A couple years later, I tried to get into another clinical trial, which I was deemed too sick to participate in -- a blood test showed my C-Reactive Protein was 10x normal. Yet, even with this objective evidence of illness, some people still insist that I'm faking, malingering, lazy...

As Joanne says, most people would choose to stay in bed on days they feel the way I do on a "good day". Only a dedicated Type A personality would come up with the idea that as long as you're stuck in the bathroom anyway, you may as well clean as much of it as you can reach from your seated position.

I work from home and have worked many days when I was too ill even to sit up, or could work only 5 minutes out of each hour. Pity some of the detractors won't spend a few days with a patient to see how un-lazy we really are.


Posted by JD, a resident of another community
on Dec 6, 2010 at 10:23 am

"Know-it-all" shows his ignorance in many ways during these postings.
The height of this is in his "LEGAL" posting.

The attitude he displays violates the spirit and intent of the civil rights laws designed to protect persons with visible and hidden, understood and emerging disabilities. He is practicing what is known in gender and racial politics - discrimination based on stereotypes, bias and mistreatment of the "other." Here CFIDS is the "other." In my extensive experience, persons with this disability are the opposite of these stereotypes. My husband, a Licensed Professional Counselor, witnessed this, and treated CFIDS patients with dignity as persons suffering from secondary effects of chronic medical illness, and mistreatment/abuse by persons such as this poster. K-I-A's postings display why Congress and various presidents of both parties and advocates have placed disability as a protected civil rights category - to prevent this abuse of the disabled.

I suggest "Know-It-All" - a display of ignorance in the very choice of title - save himself/herself the embarrassment of being on the wrong side of history and emerging science. "Know-it-alls" are best ignored, as no one knows it all. Which is the reason some humility and attempt at understanding should be exercised.


Posted by HoleInTheHead, a resident of Old Mountain View
on Dec 6, 2010 at 12:56 pm

"Young himself dismissed the arrests as "harassment," and stated that they were a factor in his move to California, "in part because the legal climate here is more tolerant for dietary researchers such as himself.""
Translation: It is easier for "dietary researchers" to rip off people in CA. P.S.: I am open-minded.


Posted by Healing with the MP, a resident of another community
on Dec 6, 2010 at 1:32 pm

There are new therapies on the horizon for this type of disease, as well as other chronic diseases. One is the MP, you can check it out at www.mpkb.org :)




Posted by Know-It-All, a resident of Old Mountain View
on Dec 6, 2010 at 8:40 pm

The Marshall protocol, developed by an electrical engineer diagnosed with sarcoidosis. Trevor Marshall (the electrical engineer) hypothesizes that bacteria lacking cell walls can live inside immune cells and thus evade detection and elimination by the immune system. The theory is not accepted by most doctors, and is supported only through anecdotal evidence.


Posted by Tom K, a resident of another community
on Dec 6, 2010 at 8:58 pm

Very sorry to read Amberlin's story.

I've been severely affected at a similar level to Amberlin for 16 years. I live with my parents who I depend on also.

I got ill when I was 16. I was mildly affected for the first few years. I could be contributing a lot to society e.g. in taxes: I did well academically (e.g. top percentil in both mathematical and verbal SATs). I was advised to exercise when left me housebound. I hope there will be more research progress soon.


Posted by Healing with the MP, a resident of another community
on Dec 7, 2010 at 7:52 am

@ Know-it-all [who thinks (s)he knows-it-all and who is probably a paid web troll by the medical industrial complex]

You are correct, Professor Trevor Marshall, PhD, of the Autoimmune Research Foundation, has earned a degree in electrical engineering. He also has gone on to do research related to the treatment of infertility & several other chronic disease conditions.

More recently, he has co-authored a chapter in the new medical book: Metagenomics of the Human Body, Chapter 12: "Autoimmune Disease and the Metagenome" and a link to much of his published research can be viewed on the www.mpkb.org website.

For those interested, The book, Metagenomics of the Human Body, (Hardcover (Nov. 17, 2010) by Karen E. Nelson can be purchased on amazon.com . A pre-print of the chapter is available to MP site for MP members to read. Anyone interested in more information may go to Web Link and register as a member :)


Posted by Bryan Kelley, a resident of another community
on Dec 7, 2010 at 7:52 am

Unbelievable and amazing at the utter lack of compassion and understanding on the part of the negative comments that I am seeing. You people are part of the problems that runs rampant in this country today. You are the people that continue to stuff your faces while others starve. You are the people that walk by with your five dollar daily Latte' and sneer at the homeless begging for change. America has turned into Amerikkka thanks to you and your ilk. I just thank Jesus, Buddha, Allah and God that I do not have to live in your neighborhoods while I myself suffer from my horrendous Coccydynia Fibromyalgia/CFS while trying everything I can to fight it. I also PRAY that you NEVER have to suffer one day or even one moment with the same disease that you so easily disparage. May god bless you all.


Posted by Know-It-All, a resident of Old Mountain View
on Dec 7, 2010 at 10:38 am

The Marshall Protocol (by Professor Trevor Marshall, PhD) has not been tested in randomized controlled trials and is supported solely through computer simulations and anecdotal evidence; it is not a recommended treatment.


Posted by Healing with the MP, a resident of another community
on Dec 7, 2010 at 2:40 pm

@ Know-It-All, you wrote:

"The Marshall Protocol (by Professor Trevor Marshall, PhD) has not been tested in randomized controlled trials and is supported solely through computer simulations and anecdotal evidence; it is not a recommended treatment."

Part of the above statement is correct. Trevor Marshall used computer modeling to look at how certain prescription drugs chemical structures fit into receptors in the human body. These receptor sites play a significant role in the human innate immune system. So that's the basis for using computer simulations in his scientific research discoveries which lead to the development of the MP treatment.

The Autoimmunity Research Foundation (aka: ARF) was started in 2004. At that time it's founder, Trevor Marshall, PhD registered MarshallProtocol.com, a website where patients who are sick with a range of chronic diseases can discuss an antibacterial therapy since named the "Marshall Protocol." (aka: MP) Since that time patients have been reporting on their individual treatment progress at this site. So there's 6 years of patient anecdotal reports on the MP treatment logged at this study site.

Since 2004, multiple published articles have been written by researchers at ARF which are based on the MP study site data and new medical discoveries about the immune system and chronic disease (Also, as I mentioned in a prior post Trevor Marshall, PhD has contributed to writing a chapter in the new book"Autoimmune Disease and the Metagenome").

In July 2009 ARF announced a collaboration agreement with West China Hospital to try the Marshall Protocol on patients with ankylosing spondylitis. The trial will be held at Chengdu, China. This medical trial is now underway.

As far as "recommended treatments" go, only you, the actual person living with a chronic disease, can make a decision to educate yourself about available health treatments and decide what works best for you!





Posted by Sarah, a resident of another community
on Dec 7, 2010 at 2:52 pm

What a hard life for you, Amberlin. Your story is so touching. Your one bit of real luck is your parents. We cannot choose our parents, so you are lucky that yours care for you so much, in words and in deeds.

As to the little stream of sniping comments -- I never met anyone who does not want to work. I had to quit when the disease took me over. A doctor told me to stop, that trying to keep up my much loved career was making me sicker. It was a hard parting, me from my career.

Think before making such silly remarks. Work is how most of us define ourselves, gain recognition, gain status. Being sick to the point of disability has no status and as the sniping comments show, does not evoke common sympathy. Only the honorable and compassionate have the courage to help the sick, a lesson I have learned in more than two decades of this disease.

Losing the ability to work also means losing income. At the time when income most helps, it is gone.

The further irony is that even with a high income, the disease continues. Laura Hillenbrand, a woman of immense discipline and grand writing skills, finally earned income with her books. She is no less sick. The only advantage the income bought her is that a doctor comes to see her, as she cannot leave her home. Web Link


Posted by jane, a resident of North Whisman
on Dec 7, 2010 at 5:16 pm

Thank you Voice and Amberlin. I learned a lot from reading this article, and thought how brave you are to expose yourself so opening to your community. Education and communication often lead to understanding, and let's hope that you have helped many of us on this journey through the sharing of your long and arduous journey. I think that you have made many friends and admirers through going public with your story.


Posted by Monique Kane, a resident of Old Mountain View
on Dec 8, 2010 at 11:35 am

I had the pleasure to work at CHAC with Anberlin for several years. She is bright, hard working, a dedicated counselor working mainly with adolescents. She did her internship with us and we hired her as Program directoer of one of our programs. When she'd get ill she would return to work as soon as she possibly could. She was never lazy. I commend her for being courageous and caring to go public with her illness. As an MFT with over 30+ years experinece I've had several clients with CFS and believe me it is a real and devastating disease and it hits people in all walks of life--rich or poor.


Posted by Colleen, a resident of Waverly Park
on Dec 8, 2010 at 8:01 pm

I am impressed and greatful that The View printed some of Amberlin's story regarding CFS. It really is a story that needs to be told widely, partly because the disease is incredibly cruel and relentless and because Amberlin as a victim of this disease and as a truly remarkable and admirable woman is a story in herself.

Though Amberlin suffers with some of the most horrendous symptoms I can imagine she still fights her way back to support others with CFS and to provide her art for fund raising to donate money for CFS research. If there ever was a woman that epitomized the saying: "you can't keep a good woman down" Amberlin would be that woman, I think. Keep kicking, Amberlin this world needs you.


Posted by Melanie Hale, a resident of another community
on Dec 9, 2010 at 10:19 pm

I'm a 46 year old who worked in a good paying job in the work world before getting CFS. This condition has so many frustrations but the biggest one for my husband, daughter and I is the amount of time I have to spend sleeping (between 13-15 hours a day). Meanwhile, their lives must go on without my help financially, emotionally or physically.


Posted by Bauer, a resident of Old Mountain View
on Dec 10, 2010 at 12:57 am

Is depression part of CFS?


Posted by Sinbad, a resident of Old Mountain View
on Dec 10, 2010 at 3:16 am

CFS sufferers, try including dried barberries (berberis) and saffron in your daily diet.


Posted by Burlingame Responder, a resident of another community
on Dec 10, 2010 at 11:58 pm

This is for 'Bauer's question about depression and CFS.

1. Some people do develop depression because of the consequences of CFS -- e.g. loss of job, health, identity, etc. -- but depression does not cause or maintain CFS. Rates of depression in CFS are no different than what is seen with other chronic disabling medical illnesses.

2. People who have depression post-CFS sometimes respond to antidepressant or therapy and their *depression* may improve substantially but not their CFS symptoms.

3. Depression does not usually come on suddenly whereas CFS can disable active previously healthy people of all ages literally overnight following what appears to be a mild flu or other infection.

4. Depression does not have sore throat, swollen lymph nodes, part of the definition for CFS.

5. Dr. Leonard Jason, a psychologist at DePaul University with expertise on CFS, says you can distinguish depression from CFS by asking people what their plans would be if they weren't sick. People with depression will not have much of a response whereas non-depressed people with CFS can tell you with no hesitation what they would do.

Dr. Jason's work: Web Link

I hope this helps.


Posted by Carolyn, a resident of another community
on Dec 11, 2010 at 12:47 pm

Thank you, Amberlin, for your willingness to share your story and give CFS the awareness it so desperately needs. It takes an enormous amount of strength and courage to put one's self out there, especially when we know how critical and unsupportive the outside world can be. This is partly why I decided to stop my advocacy efforts. How could I expect the outside world to understand CFS when many in my own extended family, friendships and former employer rejected it? You are such a bright light, Amberlin, and we are all so proud of you.


Posted by Rachel, a resident of Willowgate
on Dec 13, 2010 at 11:21 am

Here is an interesting critique of psychosomatic explanations for CFS and other diseases inaccurately believed to be caused by stress or psychological problems:
Web Link


Posted by Melanie Hale, a resident of another community
on Dec 13, 2010 at 1:30 pm

That was a good question about depression because CFS is so commonly mixed up with depression. In my case, the need for more sleep is caused by the disease itself (I think it's called hypersomnia). The doctor's haven't discovered either why our sleep is so non-restorative.


Posted by Sinbad, a resident of Old Mountain View
on Dec 17, 2010 at 5:09 pm

"You have no clue what a personal hell is until you are so sick you can't move. So wait, your time is coming..."
Again, daily berberis [barberries] (juiced or dried) plus saffron is the answer.


Posted by oerganix_MECFS_29yrs, a resident of another community
on Dec 18, 2010 at 10:58 am

Dr Judy Mikovits, one of the WPI discoverers of XMRV and the gamma retrovirus family of MuLVs in CFS and other neuroimmune diseases, will speak in Santa Barbara CA, at Gordon Medical Associates, on what some physicians who are treating CFS patients with ARVs (anti-retroviral drugs) are finding.

January 17th, 2011.

I'm sure the CFS Patient Advocate
Web Link
will be there and will report back to those of who can't be.


Posted by oerganix_MECFS_29yrs, a resident of another community
on Dec 18, 2010 at 11:00 am

For the ignorant who say people have this disease in order to get out of working, why then did Andrea Whittemore, daughter of millionaires, get it at age 11 and why did she remain disabled with it for the last 20 years? Likewise, the other children who have it. Of course the poor have it, too, but they die of starvation, freezing to death, viral heart disease, rare lymphomas and suicide - deaths that are not attributed to CFS/ME. Researchers estimate at least 500,000 residents of Mexico have it.

Evidence for a viral cause has been around since at least 1984 when Dr Peterson and his colleague paid their own money to have CFS patients' brains scanned. When read by an expert who didn't know who the patients were, he said the punctate lesions in those patients' brains were similar to those he found in HIV-AIDS patients and those with Alzheimer's, but different. This, after the CDC declared the 200 Incline Village NV patients to be "hysterical" and accused their doctors of being "gullible" enablers.

Since WPI, the research institute started by the parents of Andrea Whittemore, found XMRV and other Murine Leukemia retroviruses in up to 95% of CFS patients last year, the NIH/FDA/Harvard research of Drs Lo, Alter and Komaroff has also found this family of gamma retroviruses in CFS patients. Dr Alter previously discovered the Hepatitis C virus that was transmitting Hep C during blood transfusions. He has recently stated that he previously knew nothing of CFS but now realizes it is a serious biomedical disease.

The so-called researchers who have been unable to find XMRV in CFS patients have never discovered anything, except, perhaps, a check from a disability insurer in their mailbox.

CFS denialists, including the charlatans at CDC, have worked tirelessly to muddy the waters, issue smoke screens and delay or sabotage ongoing research on retroviral causation, but it doesn't seem to be working as well this time as it has in the past 26 years.

Inquiring minds want to know: why do virologists in the department of Infectious and Zoonotic Diseases at CDC not research, or fund research, into the infectious and zoonotic causes of CFS, but spend money year after year funding studies that purport to find that all these signs and symptoms of viral illness are actually caused by depression, childhood sexual abuse and/or unspecified personality disorders?

Read Hillary Johnson's book, Osler's Web, or google her website, to get the history of the politics and the biology of myalgic encephalomyelitis, which the CDC renamed chronic fatigue syndrome in a very successful effort to trivialize the disease and those who have it.

Since the WPI/NCI/Cleveland Clinic research showing XMRV in CFS patients came out October 2009 in the highly regarded journal Science, another retrovilogy researcher investigated what antiretroviral drugs previously used against HIV might be effective against the MLVs found in CFS patients. She found three that work, in the lab setting: AZT, Viread (tenofovir) & Insentress (raltegravir).

Two doctors who have ME/CFS, Dr Jamie Deckoff-Jones and Dr Michael Snyderman, plus Deckoff-Jones' CFS-suffering daughter and an anonymous "Ms. X" reported on Dr Timothy Luckett's blog - these 4 have all been treated with 2 or 3 of these antiretroviral drugs from 4 to 10 months. They all report a great improvement, generally from functioning at from 30-40% of normal and improving to 80-100% of normal. One has gone back to work fulltime; others part-time; all report continued improvement.

Dr Snyderman also had a rare cancer that is found in CFS patients at much higher rates than average. Since treatment with what he calls his "boilermaker" drug cocktail, XMRV and the indicators of cancer can no longer be found in his bloodtests.

What we need NOW is clinical trials of these off-the-shelf drugs. Unfortunately for the impoverished CFS patient, they cost around $1500/month plus the costs of administration and the ongoing tests needed to monitor their potential side affects. No wonder the disability insurance industry and those they support would rather pay for Prozac!


Posted by Chloe, a resident of North Whisman
on Sep 10, 2011 at 9:24 pm

Terrific that local newspaper covered this story. I am a physician and have been sick since 1996 with this illness. It has ruined my career, and taken my life from me. We are the "barely alive." My legs and arms have atrophied from lack of use due to fatigue and the ill feelings that come with movement (migraine, dizziness, worse fatigue). I have lost friends and family. I live alone in a tiny, dark apt for which I pay too much $$ Although I take good care of myself, I count the years until I might die because there is so little in life that is satisfying in this state. When will the scientific and medical community begin to dig in and take this disease seroiusly?


Posted by shannah, a resident of another community
on Oct 7, 2011 at 8:58 am

Sadly, Amberlin passed away this week. Another loss for our community of sufferers with this dreadful disease. Gone too soon...


Posted by AnotherAffected, a resident of another community
on Oct 8, 2011 at 12:17 am

I'm so sorry you had to go through this, Amberlin.

You deserve better.

I'm sorry.

All we can hope for is a cure. Sooner rather than later. Until then, we need more love, support, and understanding.

The world could be a much better place if we helped each other as human beings. At the very least, to show respect.


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