Awareness, Guest post, ME/CFS

Guest Post: ME/CFS in Metaphor

Hey readers, this is a guest post from my sister-in-law, who also suffers from ME/CFS.

Let me compare CFS/ME to trying to live life with high roller friends while operating on a minimum wage salary. There’s some justice in this comparison. Think of it like this: all your friends and family are loaded with money—so much they take it for granted, and spend it freely. They don’t even think about it. Spending money is like breathing in and out. The most natural thing in the world. Cars. Jets. Charities. Vacations. This is their life. It’s what they are used to and they’ve never known anything different.

Your friends love you and want you to be with them. Of course, you want the same, but you’ve got thirteen bucks to your name and that won’t go very far on a high roller lifestyle. You have to stretch those coins out very carefully, and often creatively, just to get the bare minimum done with them. And they hardly cover the most basic needs, much less luxuries.

You explain your situation. And they understand, or… they try to understand. They offer to pay your way. They’ll cover the travel. They’ll cover the cost of the meal. But even then, you’ve got to wear something. And that dress and shoes are going to cost you. But you want to be with your friends and family, so you go into debt. And you go out and you smile and you take those pictures, and you clink your glass in that toast, but the cost of the dress and shoes is in the back of your mind all the time. You’ll have to pay for it.

And you do. Several days, or weeks, later you surface again and you see your friends and they invite you to a gala, but you’re still half shattered from the last experience. You shouldn’t go out again so soon. So you decline, and they try to understand, but they go away hurt anyway. You go away, lonelier than you can remember having ever been.

Invitations come less frequently, but you can’t give too much thought to it, because the bills are coming in and you can barely keep your nose above them. And you have to parse out that money so carefully, just to do the most basic things. Keep your child and husband fed. Clothed. Safe. Manage your work as best you can, pinching pennies and cutting back, going hungry yourself half of the time because you need the money more than the flesh on your bones.

It’s stressful, because you want that connection to the outside world, but you simply can’t afford it. There’s guilt as well as stress, and a gnawing hunger for an existence not quite so suffocating—not quite so narrow, but again, the stress only makes things worse. It comes calling in the persona of creditor. And if you believe in it too much, suddenly even the breath in your nose costs you and you know that you’ll never see your way out of debt—even the brief reprieves are only temporary.

Occasionally—only occasionally–you wonder what ever happened to your dreams. You look at yourself in the mirror and you see a husk of your former self, and still you guard that self and all it represents, because you must. You have debts to pay with it.

And your friends and family make excuses for you, but some few of them (in an ungenerous moment) wish you would try harder to be in the land of the living. Your child feels resentful and deprived. And she is right. She wants you and can’t have you. You are already quartered and sectioned off to the creditors.

The thing about CFS is it’s not money, but it’s energy you haven’t got. And healthy people have energy in spades. They take it for granted and can’t understand what it is to have such profound weakness and relentless pain without any explanation. Can it possibly be real?

Let me answer that question.

Yes, chronic fatigue is real and its victims are many. Our disappearance is not for lack of effort. Not for lack of determination. Nor for lack of heart or nerve. We slave invisibly under debts you cannot imagine. And you—you who have your health. You are the one percent to us. So extraordinarily, so unattainably rich. Do you know how wealthy you are?

We wouldn’t wish you any less. Take your abundance and do well with it. We simply wish you knew your wealth.

Awareness, ME/CFS, Personal

ME/CFS Protest of Dr. Per Fink

Thanks to Jennie Spotila, who writes at Occupy M.E., I recently became aware of something important to the community of ME/CFS patients and researchers. A doctor named Per Fink is slated to give a presentation at Columbia University about ME/CFS and fibromyalgia. Why is that bad? To quote from Jennie’s post:

Fink is well-known to the ME community because of his involvement in the case of Karina Hansen. In 2013, Hansen was 24 years old when she was forcibly removed from her home and involuntarily committed to Hammel Neurocenter as a psychiatric patient, despite her ME diagnosis. Fink was one of two doctors overseeing her “treatment” at the institution, and permitted almost no family contact for more than one year. After years-long legal battles, Hansen was allowed to return home in 2017 2016 (as documented in Unrest), and her state guardianship was only terminated this week. Given the deterioration in Hansen’s condition while under Fink’s care, one has to wonder how his other “bodily distress syndrome” patients fare.

I am equal parts saddened, disgusted, and enraged. And there’s some fear in there as well. I don’t know what people like him get out of spreading misinformation like this. Does it stroke his ego? Does he just . . . ignore the evidence that tells him he is wrong? I just don’t know. I do know that this is very wrong. He should not be given a platform at such a high profile university to spread harmful misinformation which contradicts scientific study and hinders progress toward understanding and treatment of this illness. If you haven’t already clicked the link, please read Jennie Spotila’s post, which has links to actions you can take.

Awareness, ME/CFS, Personal

ME/CFS News and Petition

A brief summing up of what’s going on:

(T)he CDC (Center for Disease Control) intends to issue a sole-source contract with the Pacific Northwest Evidence-based Practice Center (EPC) to expedite the development of federal evidence-based treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME).

Basically, they’re hiring these people to write up guidelines for treatment. So what’s the problem?

The EPC previously conducted a systematic evidence review in 2014, but failed to account for the use of the Oxford definition and other overly broad diagnostic criteria used in many studies and which do not require a hallmark symptom of this disease—post-exertional malaise (PEM). This led to the erroneous conclusion that GET (graded exercise therapy) and CBT (cognitive behavioral therapy) were effective treatments for people with ME.

I don’t want doctors who know little or nothing about ME/CFS to recommend these treatments to patients. Exercise can have devastating effects on us, and we have to be incredibly careful. I would hate for anyone to get even more sick just because they were trying to follow their doctor’s instructions.

As for CBT, it has its uses, but here’s the thing: ME/CFS isn’t a mental illness. You can’t, you CANNOT, train yourself out of it.

My sister Isabella, a fellow ME/CFS patient, shared this email with me, and since I don’t use Facebook or Twitter, the best way for me to reach out is with my blog. Please sign and share it. They are requesting signatures regardless of country/location. What negatively affects the ME/CFS community in one part of the world is bad for all of us.