Saturday, February 14, 2015

The New Name - Three out of Four Ain't Awful, But Is It Enough?

Did you read the whole IoM report? I did, which is one reason this blog is coming out now, days after the big announcement. I've also had a PEM crash, or I'm coming down with a virus; at this point I can't tell which.

If you have not read the whole report, you're not alone. Clearly most reporters doing reports on the report have not read the report. Likely, most doctors won't read it either. And Congress? Yeah, right. But some in the government health agencies will read it. And so will some journal editors (or I guess they have already).

I was like a man whose wife was going into labor the days before the release. It was going to be great or awful. But either way, it was going to be a big change. I coped by using two strategies: I planned a ritual to look forward to either way, that is a margarita (virgin if good, with some alcohol if not). And I lowered my expectations.

As to the latter, I figured it was not going to be perfect, and I was not going to get all I wanted. Decisions made by committee are by nature reflecting diverse opinions. Areas of disagreement require compromise.

So, I said I would be happy if two things happened: that what is recommended is an improvement, and that there is not dissent of committee members. If some gave a dissenting opinion, then money wasted, and we're left with status quo.

I think the IoM's report does meet those two requirements I had. Yet, when I listened to the public briefing, my gut reaction was disappointment. Since then I have felt conflicted. I have tried to change my feelings. But, they are still there.

Still, despite my feelings, I will support this change. I'll tell you why in a moment.

First, I want to remind you, dear reader, of some of our experts who served on this committee: Dr. Ben Natelson, Dr. Lerner, Dr. Nancy Klimas, Dr. Ron Davis, Dr. Lily Chu, Dr. Lucinda Bateman, Betsy Keller and Dr. Peter Rowe.

And, here are some of the reviewers: Maureen Hanson, Dr. Charles Lapp, Dr. Susan Levine, Dr. Daniel Peterson, Dr. Jose Montoya, Christopher Snell, Dr. Susan Cockshell, Dr. Katherine Rowe, Dr. Ruud Vermeulen and Yasuyoshi Watanabi.

Recognize any of these names? These are researchers or clinicians focusing on our disease, including a few with personal experience either by having it themselves or by a family member having it. That's at least 18 of "our experts" involved. It's almost a who's who of experts in our disease either writing the report or reviewing it.

SEID - systemic exertion intolerance disease

What I like: "systemic," "disease" and "intolerance."

"Systemic" is perfect for indicating the biological impact. I'm sure there were some committee members who fought to have in the name their theory of the major system that is the cause or effect. But look again at the list of "our experts" and note what difference of opinions they have. Klimas will say it's system-wide immune dysfunction. Keller will say it's in the energy system. Natelson will say it's the brain. Lerner will say it's viral. What can be agreed on and is supported by the evidence is that multiple body systems are impacted when patients exert themselves. And "systemic" conveys that. "Systemic" makes it clearly physiological and is supported by the science and encompasses all theories of "our experts."

"Intolerance," while having an attitude aspect as one of its definitions, also refers to physiological adverse reactions to what should be handled fine in healthy people. Some examples are  alcohol intolerance, gluten intolerance, lactose intolerance, lysinuric protein intolerance, orthostatic intolerance and exercise intolerance. Gluten intolerance is a fad diagnosis now. But it is a true medical condition. So in a medical context, "intolerance" denotes an abnormal and adverse body reaction.

"Disease," well, this one I am most pleased with. Thank you, thank you, thank you. They rejected "syndrome" and "disorder." Even some things that cause death (AIDS and SIDS) still have "syndrome" in the name. We all know "syndrome" is so broad that it is used for nonmedical situations, including Peter Pan syndrome, Cinderella syndrome and even referring to society responses. It was a bold move, some might say a leap, for this committee to go with "disease." And that word is packed with meaning. This committee is sending a strong message to doctors with that word. Why I've even heard some of our experts say "disease" is only appropriate after etiology is known. Not so, says this committee. It's a disease.

What I don't like: "Exertion."

I join with fellow patients in saying that indicating our disease is about bad effects from exertion is too narrow for a description of our disease. First, for most of us, it's activity, not just what the world thinks of as exertion. When I sweep my floor for five minutes, I must then rest for two hours. My body cannot tolerate that activity. It's not just when I run a marathon or lift weights, what the world and doctors will think of as exertion (as though I could). Secondly, it implies that as long as we don't exert ourselves, we won't have any symptoms. Just go to work at your desk job for 8 hours, rest for a few minutes then fix supper. Just make sure you have a healthy person open that jar for you so you don't exert yourself. Because of that, I would have preferred "activity intolerance."

Plus, it's also stressors, such as infections, psychological and other physical stressors, that we can't tolerate without getting PEM. But I don't want "stressor" in the name because people will think just "stress."

I am also concerned it might become the butt of jokes of people who are lounging and don't want to exercise or clean out the garage saying they have "exertion intolerance disease." "Leave me alone," a man says to his wife while eating nachos while watching his favorite football game. "I'm feeling sickly. I think I have exertion intolerance disease." However, that has not happened with exercise intolerance. But that is a symptom, not a disease name.

That brings me to another point. I agree with Prof. Leonard Jason that they should have tried the name or some names out on a focus group, the public and some docs. How does the public view the name? What does it make them think? We really don't know because it hasn't been tested. And yet, last time an organization did a focus group study, the group said the name should remain "chronic fatigue syndrome," just educate the public more on what the disease encompasses. Can't always trust focus groups. And to do that would have required time and likely money, money they may not have had.

I'd like to see what Dr. Clayton says are examples of other diseases named after one symptom when the pathophysiology is not known. I'm sure she's right, else she wouldn't have been so definite about it in such a public way. I have heard of one or two, but not many.

One example is yellow fever. And that name hasn't changed. It's based on two clinical signs, not the biological mechanism. I'm sure the disease has other symptoms, too, besides fever and jaundice. And then there is the awful name of mad cow disease. What an awful name to call a disease that kills humans! We aren't the only ones with bad disease names. It would be pretty interesting to read through disease names and see what it would mean to you if you didn't know anything about the disease. Werewolf syndrome, as an example. Vampire disease is another. Yellow fever could mean people feel feverish from seeing the color yellow. Mad cow disease? Does that mean the person starts mooing all the time like a crazy cow? 'nuf said.

I will say, though, that maybe doctors will stop suggesting SEID patients take up a rigorous exercise routine by understanding the name. I can see a patient asking, "Doc, when I feel the fatigue, should I push through?" And he says, "No, your body has a system-wide intolerance to exertion. So, you should be careful to not push. And you need to make sure your family understands this. There are limits of what and for how long you can do things. You will make your symptoms worse if you exert yourself." So, even with the word "exertion," I can see some benefits. How many of us wish our doctor told us early on to not push through the fatigue?

Why am I supporting the name change anyway? I can understand why "activity intolerance" might have been rejected. Even the bedbound are encouraged to do some activity, even if it's finger raises for only three minutes a day. Our experts have cautioned us on deconditioning being a real consequence. Depending on the level, both Dr. Lapp and Dr. Klimas encourage some activity, but pacing and with limits. So it isn't exactly accurate to say our bodies can't tolerate any activity. After my first year (2003) of the on and off respiratory infection(s), I went into a stage of full function for about five hours each day (11 am-4pm). I don't mean hiking. I mean desk work and running errands, etc. At about 4, the plug at the bottom of my feet would come out and all the energy would drain out, or that's how it felt. I met the criteria because most people can be active 12 hours a day. Despite the limitations, I was still able to tolerate some activity, until my plummet in 2006. For three years, I could tolerate some activity. And even now, I can do some without a crash, but much less.

And, remember advocates, haven't most of us been saying, "It's PEM, stupid"? We, that is many of us, have been telling "them" that the defining symptom is PEM. And note, "post exertional malaise" has the word "exertion" in it. Be careful what you ask for.

As I predicted, "myalgic encephalomyelitis" was rejected because the science for that name has not been proven in big enough studies. And even if it's there, it's not for sure that inflammation of the brain is at the root of the symptoms. In multiple sclerosis, it's clear the multiple sclerosis in the brain causes the symptoms. But with other body dysfunctions in our disease, namely aerobic system dysfunction, HPA axis dysfunctions and system-wide inflammation, has it been proven that brain inflammation is the primary symptom cause? And even some of our experts feel that there has been no proof of spinal cord inflammation, even though there is evidence of inflammation around the spinal cord. I have heard some of our experts say "encephalopathy" is more accurate. And the report mentions that option, but they still rejected it for the same reason. We must realize that if the committee came out with "encephalomyelitis" based on studies of no more than 300 patients each and based on a flimsy criteria and not in comparison with other fatiguing illnesses and with disregard to the abnormalities in other body systems, then it would be rejected in the marketplace of medical professional societies and mainstream docs. I don't know what level of proof they need. But I'm sure there were people on this committee and reviewers who said it should be "ME." And I'm sure they knew rejecting it would be unpopular with many patients. So, for the committee as a whole to reject it means our own experts were not convinced it was the best option and felt strong enough to go against popular opinion. I respect that. They know the disease just as much if not more than me. And, they have a better understanding of what fellow doctors will accept.

And I must agree, myalgia is not a major factor for me; never was. Oh, I had it, still do sometimes. But it isn't major, and I would be hard-pressed to distinguish the difference in the fibromyalgia pain and pain of ME in describing it to a doctor. And I bet the average doctor would have a hard time with distinguishing myalgia of ME from myalgia of fibromyalgia. If pain is a major factor, then you likely also have fibromyalgia.

For those who still insist on "ME," may I also note that you may be loud, but you may not be the majority. When the IoM committee asked four patient representatives (two patients and two relatives of patients) what name they think it should be, none of the four longtime advocates said "ME." Canary in a Coalmine just did a survey. Less than half said it should be "ME." Granted, it was more popular than any of the others, but not more than the others combined. It was less than half that chose that as the best name.

Besides, it took me a year to learn how to pronounce it. And it has a lot of misinformation, stigma with it in the UK. Using "ME" does not do away with the misinformation and stigma, no matter what the words mean. The UK treatment studies go with "ME."

My suggestion was "commeo encephalitis." I figured "commeo" is Latin and means up and down, back and forth. This would communicate to doctors that our symptoms fluctuate, so you can't go by what we can do or how we look when in the office. And I figured there was more evidence for inflammation in the brain than the spinal cord. Plus, it's nice and medical-sounding. But, you know what, some of you would disagree with my choice. And I'll admit, it isn't good for the severe cases.

Is there a perfect name based on the science now? Probably not. I think about Ron Davis, whose son is bedridden. I think about him serving on this committee and being ok with this name, "systemic exertion intolerance disease," when seeing his son everyday unable to do the simple things. Davis said in a news article that the name thing was hard, and they went through about 100 choices. I think of Lily Chi, who has this disease. She served on this committee and has her name on the document suggesting this new disease name.

So, with some humility, as I'm sure the individual committee members had to have, I say I trust that this is the best they can do for now considering the state of the science and the differing opinions, even of our experts on the committee. If they can set aside their strong opinions to pull together for a better name, even if not a perfect one, then I can join them. I know they feel just as passionate about this as I do.

Besides, I like three out of four of the words, and it is better than "CFS."

As a sidenote: I have heard from multiple sources that "they" don't like naming diseases after people any more. (I don't know who "they" are.)

I tried out the new name on my husband. He said it conveys to him that the person gets sick from exertion. So, it is accurate, just incomplete. I told him some aren't happy about it. He asked what they suggest, besides "ME." I told him some like "Nightingale disease." He said, "After a bird? Why would you name it after a bird?" So I told him about Florence Nightingale's likely connection to the disease. He said, "But I think it's a bird too, and if it isn't it, sounds like a bird. It's a weak, feminine-sounding name." So, I told him another choice was "Ramsey's disease." He said that sounds like something Egyptian archeologists get. So, there you go. From a retired railroad truck driver. The words convey something different than what many of us think they convey. There is no perfect name that is based on enough scientific evidence to be accepted by mainstream medicine and for which all experts and patients will agree.

I'll take a break now and give you a break. I will blog soon about the other changes and features in the report.

Sunday, February 2, 2014

Name It, then Put It into a Box, It's Human Nature

It’s one of those nights when sleep won’t come. So I decided to get a snack and purge the philosophical thoughts that have floated in and out of my consciousness in the last few months.

Have you ever noticed the human need to categorize and name things? One can only assume and reason we inherited this need from our creator. Nature is categorized by species. The Bible says creatures are to reproduce according to their kind. Dogs mate with dogs and produce dogs. Watermelon cannot mix pollen with green beans and produce tomatoes.

So in addition to biblical instruction, God put in a natural species barrier that separates living things. (sidenote, this is why I don’t think it is right to mix species genes through genetic modification.)

And, according to the Bible, the first thing Adam was to do is name everything in his garden. A name is a way to distinguish one thing from another. So along with names or labels, we have definitions.

Saying what something is and what it is not is necessary for communication. And science has proven we have an inborn need to communicate. A child neglected, with no communication with parents, will not develop normally. A name that identifies something is one of the first concepts a baby learns. Remember in the movie how Helen Keller’s biggest breakthrough was learning a word to distinguish water from other things? Understanding naming and definitions changed her world.
As a communications specialist by trade, I analyze words and their definitions daily.
However, some categories go beyond the natural groupings. And some things defy definition, so finding a good name to distinguish it will be imperfect.

A good example is race. Races developed by people separating geographically and marrying within that group. The dominant genetic physical characteristics of that group became more prevalent in each generation until the group had a common look. But this is not a natural division as different races mate with no physical problems. The chromosomes match. We are all one species. So a manmade label of “race” and category is not scientific. And actually, we are seeing the gradual dissolving of racial division with global transportation and marrying practices.

In addition to species, scientists decided to form larger categories such as reptiles, mammals, insects, etc. Are these groupings by physical similarities a natural division or manmade? I purport that they are manmade. I believe our creator views the divisions of species, but not the classifications, as they are called. And in addition to classifications, scientists further categorize animals into family and genus. Are these categories, based on physically common characteristics, a similar manmade attempt as separation of humans into races?

Exhibit A is the platypus. If these classifications and other categories were God-designed, then which one does the platypus fall in? It has the bill of a duck, lays eggs like a reptile and has hair like a mammal and suckles its young like a mammal. And it has a poisonous stinger like a sea creature. It is such a mish-mash of animal traits that discoverers' descriptions and pictures of it were first thought to be a hoax. Or is it just appropriate to say it and all animals don’t have to have these layers of categorization? Why can’t it just be the platypus species, breeding within its own kind?
I'm sure the platypus is not the only one. Tomatoes are eaten and thought of as a vegetable, but it is classified as a fruit by scientists.
And this brings me to what got me thinking about names and categories. The disease I have is like the platypus. It has so many things wrong in so many body systems that it doesn’t fit into one category of medicine. Who is the specialist when the immune system, neurological system, endocrine system and metabolic system are all going awry? Instead of all seeing their piece, doctors push the patient on in a merry-go-round of office visits with each saying, “not my specialty.” When I searched for a doctor and a diagnosis, I had quite a few tell me they knew what I had, but they don’t treat it. Problem was the next doctor they sent me to said the same thing.

How does a person find the experts for a disease when it doesn’t fall into a manmade category of experts? Does this expose the flaw of categorizing illnesses by body system affected? Is there another way to practice specialized medicine without categories?

And then there is the name and definition. This is also a problem with my disease, so much so that the Institute of Medicine has taken up a study to come up with a better definition (diagnostic criteria) and likely a new name. A name is needed to communicate, express or convey accurate thought. But the manmade term “chronic fatigue syndrome” does not accurately convey the reality of the disease. For one, there are short bursts when I don’t feel fatigue. It may only last four hours at the most, when it happens, but someone seeing me during that time would think I have nothing wrong with me. They don’t see me the days I can’t sit upright in bed for more than an hour, even having to have my head horizontal.
And fatigue, severe and coming and going, is not the only symptom. This disease has at least 60 on the list (including insomnia), many of which are also seen in other diseases and also vary patient to patient and change according to disease stage. How do you define this disease? How do you categorize it? Like the platypus, it’s parts of everything else and different in each patient.

If they knew the perpetuating cause of the multiple dysfunctions and symptoms, we could put it into a category. Science has learned much of what is going wrong, but hasn’t figured out why.
What name do you give a disease that defies definition? “Maylgic encephalomyelitis” is the second most common name (there are many others), yet this focuses on the neurological when the immunological dysfunction may be the bigger factor. I do not envy the 15 members of the Institute of Medicine study committee who must find a way to distinguish this disease better than has been offered by previous definitions. Some of the current diagnostic definitions or disease criteria are better than others, but none are perfect, which is why the Institute of Medicine is doing a study.

In their recent public meeting, one of the members asked the public for suggestions on a name.

One symptom that does seem to be noticeable is a delayed exacerbation of symptoms after activity, either mental or physical. In most diseases, exercise makes symptoms better. But 8-48 hours after what most people would consider normal activity, I have a “crash.” It starts with a hoarse voice. Next is fatigue, like I’m coming down with the flu. Then the headache. Then hot and cold flashes. And then the nausea and vomiting. And the mental fog comes amidst all of this. The more I push, the more I pay. If I stop and rest (lay down for an hour or two), I might just have severe fatigue and mental fog for a few days. It all depends on when I stop and rest and my ability on that day, which varies.
However, this symptom is seen in other diseases, but to a much milder level. MS, RA and lupus have also had studies that document increase of symptoms following physical stress. In fact, quite a few diagnosed with MS actually have my disease and vice versa, studies show. So is the severity of this distinguishable enough to define the disease? We will have to see what they come up with.

One thing is for sure, the medical care structure demands the disease have a better name and definition and an assigned category so patients can receive expert healthcare. Humans are driven to distinguish by name and definition and categories.

Monday, November 11, 2013

Can you trust a blogger?

Well, that depends. These days, everyone has an opinion and Facebook and blogger sites are means for anyone and everyone to get their opinion out to the public, including me as I am doing now. (Oh, the irony.)

The days are long gone of the news media filtering what isn’t relevant, what isn’t appropriate, what isn’t factual and what isn’t important before it gets wide exposure. Used to be, whether it was a news report, a commentary or an opinion letter, there was an editor who made these determinations and decided what to put out and how.

That seems like ancient history now.
Is this return to information “wild west” days, as was seen in 18th and 19th Century newspapers, a good thing?

It's both good and bad. The good is that information is now democratized. The editors no longer have control. Power to the people! Give voice to the little man, the vulnerable and the few with no powerful influence! No longer do they depend on the judgment of an editor, have to pay for printing up fliers or go through the effort of demonstrating in public places to be heard. A few clicks on a keyboard and the whole world is exposed to what they have to say.

But some is bad. Publicly putting out information about other individuals, companies, nonprofit organizations or agencies is taking on a responsibility. It’s not the same as talking off the top of your head or sharing second-hand information with your husband over dinner.
Information is power and misinformation is destructive power.

Gladly, even on the Internet, newspaper websites are very popular places for people to get information, even more than blogs. Is this because they have more information or better information? Is it more credible? Is it more interesting?
One reason is that since the early 20th Century, newspapers have a standard for verifying that the information they put out is accurate, and so they are more trusted. One way newspapers add credibility to the information they put out is to find out from the subject of a piece if the information they have is accurate or to give them an opportunity to explain what they did and why.

Second-hand information about someone is not credible and must be verified by that individual. “If your mother tells you she loves you, check it out,” so the journalism saying goes. And reporters who learn their trade in college hear many accounts of the stories that seemed so clearly right end up being wrong, due to lack of verification.

And newspapers attribute where they got the information. Even if they use an anonymous source, they describe why that anonymous source is reliable.
And fairness, courtesy and providing helpful information to readers requires that the reporter give the subject of a story an opportunity to tell his side. It’s also important for the reader to know this explanation so they too can act appropriately or form a well-informed opinion.

It didn’t take long when I was the budding reporter to learn there are always two sides to a story, and what I was told by one side was not always accurate. Or sometimes what seemed wrong made a lot more sense when I talked to the other side. Sometimes I misunderstood and was glad I got clarification. I found sometimes I was given just part of the story. I found motives were questioned because one side did not have all the information the other side did. When I spoke to the one accused, the one whose motives were questioned, I found out what they know, and then their actions made a lot more sense.

Happened again and again and again and again.
When I took on the responsibility of reporting (publicly giving information about another) I gave up the luxury of believing second-hand information. I gave up forming opinions after only hearing one side. This was not two friends gossiping over tea. I took on a responsibility, a duty, and I tried to be responsible in carrying that out.

Recently, a long-time Associated Press reporter put out story of a candidate based on information in the deposition of a lawsuit. The person in the lawsuit was identified by initials. The reporter was told by a second-hand source that the person was the candidate with the same initials. It was defamatory.
Did he try to verify that, as journalism standards require? Halfheartedly. He called the candidate or candidate’s people and didn’t get an immediate response. He did not give them time to respond to his inquiry before sending in the story. The editor trusted the judgment of this long-time reporter and put the story out.

They were wrong. The story was wrong. The person mentioned in the lawsuit was not the candidate, and they would have known that had they waited just two hours. The reporter and two editors were fired.
This incident shows that newspapers have standards that make their information more credible.  Even when the reporter did try to go to the source, he did not live up to the standards because he put out unverified defamatory information.

Should bloggers be held to the same standards? If they want to be seen as credible and avoid being sued for libel, they should. If someone is reporting information to the public about someone else, they become a reporter. Doesn’t matter if they also include their opinions. Doesn’t matter if they do it in print, over radio or by Internet or video. It’s the act, not the title or medium or pay that makes someone a reporter.
Recently, one of my clients has been the topic of some bloggers. Some of the information is defamatory and inaccurate. But what I can’t get over is that these individuals were either making stuff up or reporting second-hand information without verification or without contacting my client.

Not only is this damaging, but it distracts from my client’s work, it takes up time and resources in my client determining how to respond, causes stress and misleads the public. But above all of this, it hurts to the point of tears.
Do these bloggers not know the power they hold? Do they not know the responsibility they have to verify before putting out this information? Do they not understand the difference between reporting a supposed fact and giving opinions? Do they not know from training or experience that second-hand sources are not reliable? Do they not care about being fair? Are they really that calloused? Are they so caught up in pushing their agenda that they just don’t care if they have it wrong? Is it based on malice? Why would they not go to the source and verify or find out why? If not courtesy or curiosity, wouldn’t fairness and sense of responsibility require this?

If my fellow reporters and other bloggers could share their insights on this, please share them with me. It’s puzzling.
What should the reader do? As I thought of answering this myself, I wondered what others thought readers should do or not do when they see unattributed, defamatory and unverified information in blogs. Should they pass it on? Should they challenge the blogger? Or, should they just stop reading that blog? Or does everyone know you can’t believe unverified information in blogs so it doesn’t matter? What do you say?

Friday, October 7, 2011

What to do in Honor of Amberlin Wu

It’s been a tough week in ME/CFS land. Researcher / institute divorce and allegations of researcher fraud have left many patients disillusioned. I’ve seen many of my ME/CFS peers ask, “What do we do now?” Others have said they are staying away from social media, can’t take any more bad news.

For me, the WPI / Mikovitz fall out was not shocking as the signs were on the wall, along with rumors passed in private conversations.  Allegations of fraud were surprising to me, but are far from confirmed at this point. I hope two things: that the Ian Lipkin study into XMRV survives and comes to completion and that patients who thought they had a savior do not lose hope and make decisions which cannot be reversed. 

I have always advocated that all biomedical research is worthy of support and the demands of loyalty to one researcher are harmful. Now, I hope recent developments will win more patients over to this thinking.  The researchers must compete for government funding and for public donations, but they should do so with professionalism and courtesy to their competitors. Shouldn’t patients do the same when advocating on behalf of a particular research effort? Most do. I hope more will bring courtesy and professionalism to how they treat all ME/CFS biomedical researchers and to other patients. 

Remember what the Bible says, “Do not put your trust in nobles or in the son of earthling man, to whom no salvation belongs.” Humans often fail us, sometimes through no fault of their own. People get sick, people have disputes with partners, people allow their bias or greed to corrupt their judgment / motives and…… people die.

This brings me to my motivation for this post: the sad news that ME/CFS patient Amberlin Wu died earlier this week, the one piece of news that affected me emotionally. She was far too young to die, about 39 years old according to my estimation from her high school graduation date shown on her Facebook profile. But a September 27 post on her blog, “Be a Light, CFS Awareness,” reveals she had a bump (injury) on her head recently that was causing neurological problems, and she was discouraged by yet another challenge to her disease-filled body.

I was first “introduced” to Amberlin through a YouTube video where she was interviewed with a friend concerning what it is like to live with ME/CFS. She showed some classic indications of ME/CFS that other patients will recognize: sunglasses even when in the shade and leaning her head against the wall for support. Otherwise, I was taken by her enthusiastic and fun-loving spirit coming through in spite of her energy-drained body. I was charmed by her transparent personality. I knew that if I ever met her, we would click.

That was 2007. A few years later, I “saw” her again in another YouTube video where she was filmed while trying an experimental treatment. This was a far different woman from the one I had seen earlier. Amberlin was in a hospital and described her recent relapse and showed her large rash. Yet, the spunky woman with the generous spirit allowed the world to peer into her moments of suffering as the medication gave her blow after blow as the hours passed by.  

Now, I just had to know how this woman was doing. She had captured my heart, although we had never spoken to each other directly. Earlier this year, I finally “met” Amberlin through Facebook. Of course, I asked her current physical condition. I am embarrassed to say I don’t remember the details of her answer. But I do remember the lift my spirit felt every time I saw her active on the Internet. 

Naturally, we all want to know what “caused” her early demise. We want to know so we can avoid the same fate or we can relax by determining that the chance of the same circumstances happening to us is remote. It’s human as we all do what we can to miss the darts of death as they seem to randomly hit targets all around us. 

Instead of needling for curiosity sake, I have examined what I can do in honor of Amberlin. I took the time to look at all her photos on Facebook. Not only did she have a good sense of humor in her “box” of illness; I also saw she was quite a ham. She found life and herself enjoyable even from her home after her condition got worse. I also saw she was very creative. She lost her career and could no longer dance, one of her great loves. But she still found ways to participate in life, through painting, making jewelry, raising fancy chickens and poetry. She also connected to people, including other patients. 

In honor of Amberlin, I believe all ME/CFS patients can imitate her. Can you find something enjoyable or meaningful or creative that you can do, despite your physical limitations? This will give your life meaning and leave a legacy. It fills the soul and gives you feelings of self-worth, an identity with accomplishments. 

Can you find a way to be kind to fellow patients, even if you disagree with them? How terrible if we treat our fellow patients with aggressive and / or abusive words, and then they suddenly die. Other patients are not the enemy; public apathy is. 

Can we share our humor, our joy and our love with fellow patients and family, in honor of Amberlin, the puppy in the mud who poked holes in her ME/CFS box and let her light shine through? 

Friday, August 19, 2011

Dale Carnegie and Ghandi for ME/CFS

ME/CFS patients find themselves in a deep hole of darkness and despair. Trying to crawl out of that hole requires great courage in the face of ignorance, bias and worst, apathy. Imagine decades of spooning away the dirt to make progress while people pass over the hole concerned only with their own schedules and recreation. Oh, occasionally, a passersby will say, "So sorry to see you in that hole." And then to add insult to injury, literally, a person will say, "How did you get in that hole? What did you do? Why can't you get out?" It's even worse when someone says, "Maybe if I pour some dirt on you, you will get out of the hole."

The frustration, the fear, the anger builds and builds. And there the ME/CFS person is, still digging away at the hole, trying to get out.

Many children who suffer from neglect and abuse will channel that anger into destructive, unproductive behavior. They do things that hurt themselves as much as the object of their anger. And sadly, such behavior does not bring an end to abuse. It may even have the opposite effect of people thinking the problem is the child, or is as much the child. Have we seen something similar in the ME/CFS world?

This does not have to be the case. With a little maturity and wisdom, and some worldly experience, many of the abused children become productive, not only for society, but to their own benefit. How many CEOs have come from disadvantaged circumstances? They have learned how to "make friends and influence people," to quote Dale Carnegie. They get people to do what they want them to do. Like Ghandi, Jesus and Martin Luther King, Jr., some have attracted people to their cause through moral principle and non-violent, but disruptive actions. They motivated, they inspired, they attracted sympathy and support because their behavior was honorable and respectful and their moral  position was undeniable.

Carnegie was an expert salesman, who influenced people to buy his products. Here is what Dale Carenegie has said that might benefit ME/CFS patients:

Any fool can criticize, condemn and complain - and most fools do.
Feeling sorry for yourself, and your present condition, is not only a waste of energy but the worst habit you could possibly have.
Flaming enthusiasm, backed up by horse sense and persistence, is the quality that most frequently makes for success.
If you want to gather honey, don't kick over the beehive.
Instead of worrying about what people say of you, why not spend time trying to accomplish something they will admire.
Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.
Our fatigue is often caused not by work, but by worry, frustration and resentment.
The only way to get the best of an argument is to avoid it.
The royal road to a man's heart is to talk to him about the things he treasures most.
There is only one way... to get anybody to do anything. And that is by making the other person want to do it.
Those convinced against their will are of the same opinion still.
When dealing with people, remember you are not dealing with creatures of logic, but creatures of emotion.
You can close more business in two months by becoming interested in other people than you can in two years by trying to get people interested in you.

Ghandi, Jesus and Martin Luther King, Jr. changed the world through their firm adherence to a moral principle in the face of great opposition. Who could argue the unjust lynchings of black people in the South were atrocities, a terrible injustice? Yet, despite the horrible treatment of their peers, these leaders took the position of non-violence in their activism. Attention-getting resistance without anger, without violence, without threats, without weapons was the strategy. And in so doing, they brought attention to their plight, made their opposition uncomfortable, and created sympathy by acting with honor and dignity when abuse got stronger. They shamed their opposition and won friends in powerful positions, and ultimately, created the change they sought when those in power took pity on their cause.

Ghandi liberated India from Britain rule, Martin Luther King, Jr. liberated black people from unjust laws and Jesus liberated people from oppressive religious laws. Sadly, some paid with their lives in the struggle. However, had violence been the method, would not more have lost their lives? As it was, the deaths were not at their hands, the deaths came from the hands of the oppressors, thus exposing their opposition as being morally corrupt.

Interestingly, within their own supporters were many who advocated for the use of violence. It seemed to be the quicker method. Yet, these leaders knew that winning a physical struggle would not change the heart of man, which is what their ultimate goal was. And what is interesting is that battles set out to destroy by force are only temporary. Such victories survives only as long as the muscle is there. But when mankind's heart is changed to reject something as immoral, the society is changed, and that lasts for it is supported by the will of man and not force.

Here's what Ghandi says that might help ME/CFS patients:
A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history.
Anger and intolerance are the enemies of correct understanding.
First they ignore you, then they laugh at you, then they fight you, then you win.
Non-violence is the greatest force at the disposal of mankind. It is mightier than the mightiest weapon of destruction devised by the ingenuity of man.
Power based on love is a thousand times more effective and permanent than the one derived from fear of punishment.
We win justice quickest by rendering justice to the other party.
Anger is the enemy of non-violence and pride is a monster that swallows it up.
When restraint and courtesy are added to strength, the latter becomes irresistible.

Quotes from Martin Luther King, Jr.:
Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom.
Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.
Freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed.
Human progress is neither automatic nor inevitable.... Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.
I believe that unarmed truth and unconditional love will have the final word in reality. This is why right, temporarily defeated, is stronger than evil triumphant.
I have decided to stick with love. Hate is too great a burden to bear.
Never succumb to the temptation of bitterness.
Nonviolence is a powerful and just weapon, which cuts without wounding and ennobles the man who weilds it. It is a sword that heals.
Peace is not merely a distant coal that we seek, but a means by which we arrive at that goal. 
The art of acceptance is the art of making someone who has just done you a small favor wish that he might have done you a greater one.
The limitation of riots, moral questions aside, is that they cannot win and their participants know it. Hence, rioting is not revolutionary but reactionary because it invited defeat. It involves an emotional catharsis, but it must be followed by a sense of futility.
We must develop and maintain the capacity to forgive. He who is devoid of the power to forgive is devoid of the power to love. There is some good in the worst of us and some evil in the best of us. When we discover this, we are less prone to hate our enemies.

Other examples of those who caused change through non-violence, no threats, just resistance based on a moral principle: Desmond Tutu and the Arab Spring. History shows this method is successful.

All of these have created change through the power of their collective will, unity in goals and peaceful resistance. Sadly, some of the ME/CFS "advocacy" or "activism" has not been constructive, but destructive. It is set to tear down the opposers instead of change them. Some actions have actually created sympathy for the enemy instead of for the patients.

Thankfully, no real violence has occurred. So I speak metaphorically. Violent or threatening words, untrue allegations, are not in the spirit of those who successfully changed society. We do not have to resort to such tactics, because we can win on morality, we are right on the issue. We don't want people to lose jobs. We want the situation to change. Our fight is not against people, it is against bad policy, ignorance, apathy, injustice and incorrect information.

The challenge is that with so little energy and money, how can we be heard? How can we bring attention to the issue? One of the most successful campaigns I have seen is the email campaign of patients asking NIH officials: "What have you done for ME/CFS today?" It was non-threatening. It showed power by the sheer number who participated. And it was disruptive, it brought attention. Dennis Mangan even mentioned his mother was getting emails. And he promised some action, if only the emails would stop. A few months later, the NIH had a big researcher conference, where those who research in other areas got a good lesson on the status of ME/CFS science.

I ask my fellow ME/CFS patients to find advocacy and activism that builds the reality we want instead of destroys what we don't want. I urge them to say what change is needed instead of telling what is wrong. Focus on issues, not people. Tell what right actions you demand. Be loud. Be disruptive. But be strategic. Be wise. Be constructive. Attract. Inspire. Motivate.

It may feel powerful to take down the enemy. But, it is no victory if it pushes away many prospective allies. While it takes longer and requires more patience, changing attitudes through positive actions is much more powerful and long lasting. Resist the temptation of the illusion of power at the expense of real change. Don't throw stones as we then become known as stone-throwers and lose our moral authority.

We can get out of this societal hole we are in, if we continue to dig with our spoons and speak loudly and in unison. As with the examples above, we may attract those with real power to bring us out of our hole.

Friday, January 21, 2011

Whittemore Peterson Institute Leads ME/CFS Research

In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on October 8, 2010.

This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.

On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.

XMRV is similar to HIV, the retrovirus that causes AIDS.

Several countries have banned ME/CFS patients from giving blood. In many cases these bans are for life.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site:

If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit:

For more information about the ME/CFS Worldwide Patient Alliance and efforts to increase awareness of this illness and the scientific discoveries, go here: