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 …
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.
PS: The sub-heading “Worth the Ride,” is a slap in the face of everybody who is suffering a great deal from M.E. as well as their partners and children. Whatever lesson I was meant to learn from being this tremendously ill, it’s not been worth it. Not even close.
I was just about to go to sleep when I had to check my iPhone one last time and saw your post. I know I wouldn’t have been able to sleep before replying. First off, I’m so sorry you’re not feeling well – I completely understand and hope you are feeling better soon. Secondly, big kudos on your reply to that HORRIBLE post. You hit the nail on the head!! I’ve had ME/CFS & FMS for two years. It’s the most horrible thing I’ve experienced and not because of the pain or other symptoms but because of the hurtful comments, looks or complete absence of apathy from those you love and share your life with. The post you commented on was flippant and absolutely detrimental to our struggle. I’ll be posting my own comment as well. Thanks for sharing! Incidentally, I’ve been taking amitriptyline for the last two months and it seems to have really helped my energy level. Just thought I’d mention it since I know I’ve been willing to try almost anything to make this better. I try to spread the word when I find something that works, realizing of course that everyone’s disease is different.
Sending thoughts of good health your way!
hi kristi, i can totally relate to the cannot-not-reply reaction. i hear over and over, and just did from you again, how much the ignorance of, and abuse by, others adds greatly to our suffering. so, when people go public with their “success stories,” I hold them to a high standard to not further hurt the patient community. this blog post receives an F from that perspective.
in terms of sharing those treatments that seem to make a dent for us, that is almost all we have. i have learned more about this disease from other patients than from doctors, including doctors who allow inconsiderate and unwarranted guest posts on their blogs.
Maybe she’s not ‘ME’ after all. I’ve been reading a lot of very interesting information of the Hummingbird website of late. Looking forward to hearing more from you but keep resting and don’t push it. 🙂
that thought occurred to me, but the truth is that we don’t know. if she really did have ME, then her luck making the recovery she did rivals that of a person winning the Mega Millions jackpot and it would have been her responsibility to make that clear.
I like your comparison! 🙂
You rock, Jeanette. I read the article last night, and it made me so sick that all I could say was, “The secret to healing from CFS is to not have had CFS in the first place.” And that’s reductive, of course, because there are (some few) people who get better, but it doesn’t change that this person is presenting a strategy that will not make the great majority of sufferers better.
i’ve been too sick to post anything here, but reading that blog post last night turned my auto-pilot on. there was so much wrong with that post, i was completely shocked. i admire toni for her restraint in her response, although i admit that i was much more restrained than i thought i would be able to after reading the piece.
i did see your reaction on the web last night and laughed out loud! 🙂 reductive or not, it drives the point home.
This piece was one of the worst I have read in a long time, so thanks for reacting to it. I was relieved when Karen closed her own blog because the picture she painted was all about ME as lifestyle choice, not about a serious, extremely debilitating illness. It seems all Karen really cares about is promoting herself and what she thinks she has “achieved” or what she “deserves”. All extremely self-centered without much if any concern how what she writes may affect others with the illness she claims she cured herself from. With “friends” like these…
hey andy, i kept wracking my brain trying to figure out the motivation for this blog post. sharing with others what has worked for you can’t be it, since so many others have tried already what she suggests, without similar results. so, what does that leave us with?
there were so many little barbs in this piece–the sub-heading about how it has been all worth it to her, the pink dress (how many of us do not even get out of their JPs every day?)–so, i would have to agree with you: it’s hard not to come to the conclusion that this piece is indeed self-centered and self-promoting, on the backs of seriously ill people. it makes me upset, but most of all, it makes me very sad that somebody would do such a thing. hasn’t this patient community suffered enough already without any gratuitously added pain?
Go, Jeannette! Fantastic response in all ways! I agree with all of it and give you my proxy vote to oppose the publication of that insulting, pointless, inane piece of — what? I confess that I did not read the offensive piece, and am afraid to as I’ll get too angry and upset, which will wipe me out and have me conjuring up responses all night and into tomorrow. Maybe I’ll read it later in the week.
Doesn’t the author know of the range of symptoms of this disease from people who can work and crawl home to bed afterwards to those who cannot get out of bed without help, make food, take a shower, do errands, walk in the sunshine, have fun, etc. Is the author ignorant of all this? Is it sheer denial? Or is there something more underhanded at play, the willingness to allow the government and medical establishment to sit idly by while people suffer? Because articles like this give them permission to do so. Why would anyone with this disease do this to others with the disease? Is it mean-spirited? Or has the spirit of the CFS nay-sayers taken over her thinking?
Oh, here I am on a roll and I didn’t even read this article.
You said it all well.
Have you done the Ampligen? Or tried anything else? Or is it “just” another bad period of worse symptoms?
Am thinking of you and check in frequently to see what is happening.
Obviously, your thinking and writing talents are still intact, and your sense of humor!
hello, ms. kathy!
i have no idea what the author was thinking when she wrote her piece. it’s inconsiderate and irresponsible and, most of all, it’s inaccurate. but she got an MD to endorse it by posting it on her blog and writing a glowing intro. not sure if the author acted more irresponsibly or the doctor. once again, with ME, it’s a free for all. anybody can say anything and the medical establishment will not question the accuracy of the statements. it will even support them, at the expense of the patients.
i am on ampligen right now. making it happen has been the hardest thing i ever had to do in my life because it involved a move that almost killed me and i am paying dearly for it. i think it’s been a mistake, but what’s done is done. now, i can only hope that the drug will restore me somewhat to my pre-move state. the things we do out of desperation.
thanks for continuing to follow me, kathy, even though my posts have been so sporadic.
hope you are doing reasonably ok.
Now that I’ve skimmed the aforementioned article, it reminds me of the Bernie Siegal approach to cancer, that somehow people want to have the disease, and that with the right, cheerful attitude that they can recover. And if they don’t, it’s their own fault. Just have a sunny, optimistic approach and you can cure your own cancer. It’s in your hands. Gosh, this is maddening. Doctors and other health care professionals, as well as those with cancer have proven him wrong.
It would seem with all of these biomarkers now being found that the science of CFS would predominate over the sole issues of coping mechanisms, personality and attitude.
the biomarkers of ME are a good point. sometimes, i feel like it should be required for self-proclaimed patients who write about the illness to make public their test results, so that we can be sure that they really did or do have ME. if not, they really have no right to speak for or about us. what are their numbers for their NK cell function? their viral titers? their VO2 max results? their RNase L? their cytokines? etc.
if somebody had the abnormal test results of a typical ME patient and still recovered thinking positive thoughts and doing yoga, then, well, maybe they are on to something.
Did you make that move that you were talking about to go to the city where you would receive Ampligen? Are you driving back and forth to your house to see your family? Or are you staying in the other location? How is your child doing?
I don’t know my own test results, but all I know is that today I just did errands within four-block area of my house and had to sit down twice and felt like I’d pass out. Allergies and whatever else have kicked in.
Hope you recover from all of the traveling and that Ampligen helps. Am looking forward to reading about it.
instead of my commuting from and to incline village to get ampligen from dr. peterson, as we had initially planned, we all moved here. commuting was just not realistic, especially not being on ampligen. the move was brutal. maybe i’ll write about it. really, i am just trying to forget about it. it was something i never, ever want to go through again: moving under that kind of time pressure with that many things to take care of in the process. insane for a healthy person. not sure what to call it for somebody with ME. had i known how little time we’d have, i would have NEVER decided to do it.
i know that there are many patients who don’t have the money to have all these tests run or who are not close enough to a qualified physician. i didn’t mean to suggest that they are not legitimate patients. i am sorry if that’s how it came across. i was just so put off by the blog post of ms. cripps. the mere fact that people think they have ME, even if they have been told they do by an MD, should not qualify them to write about it as if they really do. the vast majority of physicians don’t know anything about ME and are not at all qualified to make that diagnosis. people walking around telling everybody they had ME and yoga and happy thoughts cured them REALLY hurt the genuinely sick. i wish those people were somehow required to establish their bona fides to prevent them from acting so irresponsibly. not realistic, i know. but one can always dream, huh. in the absence of such a mechanism, we can only rely on people’s conscience. unfortunately, it was just proven to us again that that doesn’t work.
Right. It obviously doesn’t work with some people. I think many of us with ME/CFS would behave in a principled way that wouldn’t harm anyone else.
Yeah, yoga and cheerfulness, right. A cure. It still reminds me of people with cancer and Bernie Siegal’s sham program that if people had the right attitude, they wouldn’t get sick or would improve. It is maddening.
I have no idea how you moved, having this disease. Relatives were visiting and I had to clean my house, which rarely happens. It took me eight days and my ME/CFS symptoms got so bad that I couldn’t walk through my apartment for a few days. And I just did 15 minutes at a time. No wonder I never do this! I cannot imagine moving.
Are you going to go back to California or stay there?
Just hope that you’re ok in the long run and that this relapse doesn’t last long.