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.