Counterproductive Post

Posted on May 7, 2012 by

I am really sorry for having been MIA for a while. I owe a number of you responses. I am not doing too well, but I am well taken care of. So, please: no worries about me. I have lots of stories/blog posts in me and I can’t wait to write away. But it may be a few weeks before I am able to.

In the meantime, I read a blog post, “The Secret To Healing From Chronic Fatigue Syndrome” in Psychology Today, that made it impossible for me not reply. This is the stuff that our abuse is made of. And coming from one of our very own (so claimed at least) it’s doubly (triply?) painful.

Anyway, I managed to pull of a comment. Here it is. More soon …

Counterproductive Post
Submitted by Jeannette on May 6, 2012 – 8:59pm.
Ms. Cripps, I really struggled with your piece. First of all, I truly am happy for your being better. Seriously, this is not a case of envy or anger. I think it’s awesome that you recovered using the techniques you used, something that hundreds of thousands of patients have tried–unsuccessfully.

But (and this is a big “but”) you are, I am certain, aware of the great difficulty sufferers of ME have being believed (as having a genuine and very serious disease without effective medical treatment) and supported by family, friends, neighbors, colleagues, doctors, etc. When I say “great difficulty,” I mean basically that ME patients are victimized and disbelieved and ridiculed and met with hostility and disbelief wherever they turn. This “difficulty” adds a huge burden to an already extremely sick patient population. The reason for this abuse and mistreatment is prejudice and misinformation. I am quite certain that you are aware of this, as it would be impossible to feel comfortable writing about this disease without that background.

Given that, I ask you: Didn’t you feel any responsibility to the millions of people who suffer greatly from ME not to trivialize their suffering by suggesting that lifestyle and psychological changes could cure their illness? Your recovery–something that doesn’t happen to the vast majority of patients, no matter how hard they try–makes you even more accountable for your suggestion about how to treat the illness. You have failed the patient community in a major way here by indicating that the illness does not need a medical cure, but only lifestyle changes. Would such an approach be the way to handle cancer or AIDS or MS or other serious illnesses? What worked for you has not worked for many others and by making the claim that it would, you are giving all the abusers another excuse to continue abusing. I have to believe that this is not what you intended.

Whatever ultimately helped you recover, what we really need (“we,” as in millions of patients) is scientific research that will help everybody. Posts like yours just give excuses to the governments and the medical and scientific community to cling to the opinion that the illness can be dealt with psychologically or with lifestyle changes, as opposed to drugs or treatments that attack the physiological causes of the disease (e.g., very low NK cell function, high viral titers, etc.).

While it is always useful for any chronic illness to describe effective coping mechanisms, this disease is so under-reearched and under-treated that perhaps it is counter-productive to stress the coping as opposed to the curing and researching aspects of the illness. Have you ever noticed how the mind-body connection is stressed so much more in ME than in every other serious chronic disease? Think AIDS, e.g., until massive research dollars were spent to come up with effective treatments, millions suffered and died without help, even though, no doubt, techniques, such as yours, were of marginal benefits to some.

So, I only ask that you consider the consequences for a great number of severely ill people of what is no doubt a well-intentioned post.

Sincerely,
Jeannette
www.thoughtsaboutme.com

Posted in Advocacy | Tagged , , , , , , , , | 17 Comments

Comment on Dr. Lapp’s Blog Post

Posted on February 17, 2012 by

Here is my comment on Dr. Lapp’s blog post from yesterday, What Are The Most Important Things To Remember About CFS/FM? The comment is awaiting moderation.

Dr. Lapp,

I am a patient and I appreciate your contributions and your commitment to helping the ME community. But I had a hard time with this piece. It touches the it’s-all-in-your-head nerve with me and other patients. There is no doubt that emotional equilibrium  (acceptance and attitude) can be healing for all chronically ill. And, of course, pacing (adaptation) is crucial to avoid further deterioration for ME patients.

But I think it is very important for the few experts in the area to keep in mind their potential audience and to be fully aware of their responsibility in not painting a picture of the illness that is easily misunderstood. Patients are ridiculed, shunned, blamed, disbelieved and judged by their family, friends, neighbors, colleagues and physicians every day. After reading this blog post, it might be easy for those “non-believers” to feel justified in their unfair treatment of patients. After all, if the big difference between remaining ill and recovering is acceptance, attitude and adaptation, then it must be a patient’s fault that he or she has not yet gotten well.

Why not first establish how serious this disease really is and give a couple of examples of people’s incredible limitations due to the illness, so that whoever reads this post written by one of the specialists, you, can fully appreciate how hard it is to accept and to adapt? And why not stress, just to make sure there won’t be any misunderstanding, as there are already way too many when it comes to ME, that while attitude is important, ME patients have lots and lots of abnormal test results; you know, test results that cannot be explained by false illness beliefs? Also, why not mention that “recovery,” which you mention, is extremely rare?

Again, I am not contending that emotional stress is toxic for ME patients and that we need to minimize it whenever we can. But I worry about an article being out there that was written by a specialist and that promises in its title to explain the most important things about ME without even hinting at how serious this disease is.

Ok, so now after speaking my mind, I will work very hard on going to my Zen place again. I promise.

Sincerely,

Jeannette

PS: I am using the term ME instead of CFS, as many patients find the name Chronic Fatigue Syndrome, or worse, chronic fatigue, derogatory and misleading.

Posted in Advocacy | Tagged , , , , , , , , , | 41 Comments

Going New-Agey

Posted on February 8, 2012 by

When I started writing today, I had planned on talking about the LeRoy-conversion-disorder craziness, which got me very much ticked off.  Doctors who victimize their patients for their own warped needs have that effect on me.  I am in bed with my head almost flat and typing is not totally easy, but when I get upset, I get the urge to express my thoughts and feelings.  And since the cats keep falling asleep on me (literally) when I talk to them, I write.  I started out wanting to give a quick update on how I am doing, as some of you had asked about that, and before I knew it, I was several paragraphs into talking about my last test, a lumbar puncture.  So, I think I’ll keep my LeRoy thoughts for another day.  Still steaming though.

So, how am I doing? Let’s just say I’ve been better.  All the testing of the last two months has taken a toll.  On top of it, I have a spinal headache from a lumbar puncture that I did last week, which is why I am in bed.  The lumbar puncture (also called spinal tap) procedure itself is actually not too bad.  It’s invasive, yes.  So, you definitely want a doctor who has lots of experience with it and takes it seriously.  This is not the time to accommodate residents in need of practice. With an experienced doctor, this is a fairly safe procedure.  The pain of having your spine tapped is no big deal.  Think the level of pain of having an IV started, less actually.  The mental image of somebody putting a needle into your spine and drawing spinal fluid, on the other hand, was a very big deal for me.  It is a thought that really freaks me out and it took lots of convincing from Ed and friends (Thank you, guys! You know who you are.) for me to go through with it. I am a very curious person and I love to learn as much as I can about all kinds of different things, but I could not bring myself to researching the details of this one beforehand and even since. A week after the whole thing went down, I am still trying to keep the mental pictures out my head.

For those of you who have gone through an epidural during labor or for back pain: No, this is not the same thing.  I had an epidural for my c-section.  The whole c-section (a scheduled one for a couple of medical reasons; this parenthetical probably sounds defensive, but I just don’t have it in me right now to respond to comments criticizing the rising c-section numbers), including the epidural was one of best and easiest medical experiences for me ever. Yes, I didn’t like the thought of having the anesthesiologist poking around in my back then either.  But it wasn’t exactly optional.  Plus, and this is the big difference besides getting a huge prize in the form of a baby, they give you meds that take the pain away.  And, unlike with the procedure I just went through, they do not draw about 16 cc of your spinal fluid out of your back, which really means out of your brain. So, no risk of a spinal headache afterwards. Continue reading →

Posted in Testing | Tagged , , , , , , | 9 Comments

About Doctors and Facebook Friends

Posted on January 11, 2012 by

 Ampligen Hope

My next blog entry was reserved for my recent medical tests and appointments, but I am still processing all those and haven’t come out yet from under the mountain of new information.  I also haven’t recovered to my pre-tests baseline yet.  One of the worst new symptoms is the crazy insomnia, the kind I had for two or three years when I first got sick.  Like almost every ME patients, I am accustomed to not sleeping well, but not this badly.  I hadn’t slept more than two to three hours a night in 15 to 20 minute increments since the end of November, which is when I did my VO2 max test. The VO2 max test must have really messed with my immune system, which, in turn, must have messed with my sleep. I think the tilt table test added to the insomnia problem greatly because it was one of the most frightening, physically uncomfortable and degrading experiences I remember and my body has not worked through that ordeal yet.  So, a few days ago, I couldn’t take it any longer and finally broke out my sleeping medication.  Being dependant on some pill for sleep makes me uneasy.  But trying to function on three hours of interrupted, light sleep makes me miserable beyond a tolerable point even by moderate to severe ME measures.  I fought it as long as I could.  The sleeping meds won.

What takes up a lot of mind space for me these days is the decision of whether or not I should move to Incline Village for a while to get Ampligen from Dr. Peterson.  After the few initial months, hopefully somebody else in the Bay Area can take over giving me the infusions and I can move back.  This prospect has given me more hope than I have ever had since I first got sick: Could I really have a closer to normal life again for at least a while—until the money runs out at $30,000 a year out of pocket or Hemispherx, the maker of Ampligen, goes bankrupt, whichever occurs first?  The latter could potentially happen any time now since the government can’t, after 30 years, be bothered to fast-track Ampligen—the only drug that has ever really helped ME patients, at least the ones with the right profile—and, without an FDA-approved drug, Hemispherx is probably hanging on by a thread at this point.  But the idea of moving to Incline Village is also making me sick to my stomach.  Ed and I have a 19-month old girl, Aimee, and leaving her for just three nights for my first appointment with Dr. Peterson this past week gave me a taste of the emotional torture that I’d sign up for.  Commuting four hours one way (under the best traffic and weather circumstances) each weekend from Lake Tahoe to the Bay Area seems like a daunting task.  I don’t know if I could drive that long even now, but attempting to do so on Ampligen, which will make me feel worse for a few months, might be completely unrealistic. Of course, not seeing Aimee for at least a couple of days a week—not nearly enough as it is—is even less imaginable.

It is impossible to know the pain of being separated from a young child, unless you have experienced it.  The intensity of the ever-present and physically palpable longing for Aimee that Ed and I felt last week surprised me.  This, of course, was amplified for me by a hefty dose of guilt:  If it wasn’t for me and my crazy illness, we could have been home with Aimee or have taken her with us.  When Dr. Peterson first brought up the option of him giving me Ampligen for a few months, I mentally filed it under pipe dream right away.  He could tell by the look in my eyes, so he said not to dismiss this opportunity outright and that he is always impressed with the resourcefulness of his patients, financially and otherwise, when they are offered a second chance at life.  And just like that, he got his hooks into me because he is blatantly obvious in coming from a place of wanting nothing more than to help his patients.  That is very powerful.  I have no doubt that Dr. Peterson is convinced that Ampligen will help me based on my biomarkers.  No guarantees, but no other agenda either, e.g., of enrolling me in the trial for a new drug. Continue reading →

Posted in Understanding ME/CFS | Tagged , , , , , , , , , , , , , , , | 23 Comments

Happy New Year!

Posted on January 3, 2012 by

Some of you have sent me messages asking how I am doing after the battery of tests I have had at the end of last year. I am really touched by the way people in the ME community look after, and are concerned for, each other even though everybody is struggling just to get through the day themselves.

I am not as bad as my imagined worst-case scenario. But I have definitely taken a hit. So, I have had to pull back from my online presence for the time being. I hope to be back soon. I am very well taken care of by Ed.

One sliver of hope is that I am about to see Dr. Peterson. I will try to pick his brain about potential treatments: Ampligen, Rituxan, GcMAF and CMX001.

Best wishes to everybody. Let 2012 be a better year for this patient population!

Posted in Uncategorized | Tagged , , , , | 3 Comments

“I am tired, too” Revisited

Posted on December 4, 2011 by

It’s been a rough week:  I did a VO2 max test, a two-day neuro-cognitive test with a neuro-psychologist, a brain MRI and a neurological exam with a neurologist.  VO2 max is a short, but intense—at least for ME patients—exercise stress test that is repeated the next day.  ME is the only disease in which this test will show a drop in the anaerobic threshold on day 2.  My drop was a whopping 58%.  I am going to enjoy sending this to my disability insurance company.  The test result will be life-changing for me, in good and bad ways.  More about this in a separate post.

I have never had my IQ tested and I am very competitive.  So, as physically miserable as I was after the VO2 max, I enjoyed the mental challenge of the neuro-cognitive test.  It’s hard to gauge, but my feeling is that I did fairly well on that test, even though I couldn’t define the word “palliate.”  I did the testing for a number of reasons.  One was to convince my disability insurance company that I really am cognitively limited.  No worries, I do realize that it’s not like they really care how limited I am; they are just looking for an angle to cheat me out of my benefits no matter how sick I am.  Another reason was to find out myself how bad it is.  I can push extremely hard cognitively for a couple of hours, knowing that I’ll pay a big price for it, as is typical for ME patients.  I pushed so hard during the test that I was very nauseous at times.   After the test, I was completely empty each day, nothing left.  This is not something I could sustain for 8 hours a day and definitely not something I could sustain for a job that would pay 60% of my prior income.  But nobody will be able to claim that I didn’t try hard enough.  My integrity is very important to me.

The brain MRI challenged me in a different way.  I am very claustrophobic and had an almost complete meltdown right before they put me in the tube—despite having taken Ativan.  With the help of my husband, Ed, who was standing by my feet the entire time smiling at me, which I could see in a mirror right above my head, and an awesomely patient imaging crew, I got through it. Continue reading →

Posted in Understanding ME/CFS | Tagged , , , , , , , , , , , | 26 Comments

Llewellyn King: The Silent Suffering

Posted on November 22, 2011 by

Llewellyn King’s latest piece about ME, “Chronic Fatigue Syndrome: The Silent Suffering,” was published today in the Open Salon.  Mr. King, with his signature style of elegant and no-nonsense language, achieves what is so elusive for most writers: to give the reader a hint of what it’s like to live with ME. Here are the highlights:

“… of all the big diseases, [ME] is probably the least publicized, least talked about, and the most ignored in medical institutions…”

“As AIDS was initially, [ME] is haunted by fear, stigma and ignorance. It is misdiagnosed and often its victims are abused, thrown out of their families, and live in squalor and pain with little hope. They despair that they cannot convince doctors, their families or their loved ones that they are, in fact, sick.”

“… in that world of anguish, where the victims feel they are to blame because they are a burden to those who love them.”

“Most doctors are not qualified to offer [ME] diagnoses …”

“Suicide is common …”

“… an experimental drug, Ampligen, is helping a patient elite of about 750: They can get the drug in limited trials and can expect to pay between $25,000 and $40,000 a year for it.”

One clarification regarding the last quote: According to information published by Hemispherx, the maker of Ampligen, earlier this month, there are currently only 26 ME patients on Ampligen–no doubt due to the fact that the price tag puts this drug out of reach of most people.  I am one of the lucky few who may soon join the ranks of Ampligen recipients. 750 may be the total number of ME patients who have received Ampligen over the course of the last few decades, although I believed that number to be closer to 500, but I am not certain.

I feel the greatest gratitude towards Mr. King for his unwavering support.

Posted in Advocacy, Understanding ME/CFS | Tagged , , , , , , , , , , , | 9 Comments