Tuesday, May 12, 2015

Today: The Personal and the Political

Today is our annual Awareness Day and I'm celebrating by crashing so hard I felt like I couldn't do anything to raise awareness. I wrote this blog post anyway, and had to come back and edit it to highlight the awareness raising it reveals: while it's mostly a personal update, the personal is always the political when you have an low-funded invisible illness. 

Before edit, I just said pretty much that I had nuffin to say, so go look at other places instead, referring readers for example to these two sites:

 May 12  has some good information and a new site has just been launched by the producers of coming documentary, "Canary in a Coalmine." Check it out here: #MEACTION

Then I mumbled all humbly, "and If you want to know where I'm at today, read on."

Now I will invite you, if you want to see how the personal illustrates the political, read on. 

Today marks the ninth Awareness Day since my two then-young children and I returned from a trip to L.A. on 5 May 2007 and all three of us were slammed by the worst flu ever...and thus began our journey into the pit. Because in past politics killed some of the best research being done, time and again, our doctors were unable to spare us eight years of suffering. 

Today, I'm delighted at one daughter being well enough to complete her second year of university study at age 18, across the continent from home, while working a really intense real-life professional job. I'm devastated that the other daughter, despite getting better care, is still confined to two rooms, sicker than ever. What is it that allows some ME patients to recover spontaneously while others only become more ill? Will science ever be funded, to explain this?

Today, I'm grateful for the care I'm receiving from integrative MD's like Dr Brian Bouch and Dr Faseh Hameed, acupuncturists like Dr Audra Lehman and herbalists like my family farmer and cannabis cooperative organizer, DJ Pete. Without every one of these people's input I'd be feeling far worse than I am. The politics here, is the politics of availability. Few impoverished ME patients have access to integrative specialists, acupuncture, cannabis and other "alternative" therapies, and "mainstream" medicine completely fails them, leaving them to the mercy of unhelpful and even damaging treatments. I'm grateful to be one of the lucky few, but angry that it's luck, when all patients worldwide should have access to really helpful treatment

Recently, I'm intrigued to learn that I'm a mutant. Dr Hameed ordered the test and the result is that I'm compound heterozygous for the MTHFR mutations C677T and A1298C. With my doctor's help, I can now learn about the impact of the mutations and ways to address their effect on metabolism. Already, using a different form of B12 than I formerly did, I'm seeing improvements. Personally, I'm glad to have a doctor who saw the usefulness of the test and ordered it, and will help me address the defect. I'm sad to know that the politics around this disease make it unlikely most doctors are aware that they should test for MTHFR mutations in their ME (or "CFS" or related diagnoses) patients. 

This year, I've been too ill to follow the research and politics closely, but I do get glimpses. I'm excited as research provides new proofs of physical evidence of the damage caused by the disease, but frustrated as some continue to dismiss it as psychological in face of all that proof to the contrary --- while the press, when they do pay any attention, hail each successive discover as "the first evidence that ME is a physical illness."  I'm aggravated by the relegation of M.E. to a funding ghetto, but thankful for every penny that does get allocated to real scientific study. As difficult as it is for me, personally, to follow all those ups and downs in ME research and politics, it's a shame that they go on without most peoples' knowledge, considering that ME and/or CFS affect "more Americans than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis..." yet all those diseases get more attention and funding. (Quotation from http://www.name-us.org/ResearchPages/ResEpidemic.htm where citations can also be found.) 

Today as always, the personal is political in M.E. I'm discouraged to have my menstrual cycle kicking in again, with all its attendant exacerbation of symptoms. I'm relieved that this offers an explanation for recent worsening of symptoms like dizziness, exhaustion, and migraines. Of course, although there is plenty of evidence that health is strongly impacted by hormonal changes in ME patients, whatever their gender, and although such studies would shed valuable light on the impact of ME on the endocrine system, there are no studies on menstruation and M.E. 

And today, I'm wincing as I recover from dental work. But I'm thrilled to be receiving dental care at last, again, the MediCal system having finally repaired its judgment error of denying regular dental care to adult patients, thereby increasing our risk of heart disease, cancer, diabetes, dementia and more. My personal experience of difficulty accessing health care is not limited to me, or to people with ME, or to disabled people in California, but is the experience of people with low incomes everywhere, increasingly even in countries once known for progressive health care coverage. The politics of health care need to be about providing care and preventing disease, not about denial. 

I'm seeing that every paragraph here could easily be expanded into an entire lengthy blog post. And I'm laughing at the adverb. Easily, in the sense that there's a lot of material to cover. Impossible, in the sense that already I've blogged in my head at length about all of it, over the months and weeks, but already made myself nauseous and dizzy by typing what's here, now, today. I, personally, do what I can, when I can, but like most ME patients I can't do much. Our society, politically, has failed us in funding for research, in access to care, and from medicine to journalism to government, failed to take seriously a devastating illness affecting increasing millions of people. 

Today, I wish you all well. With all my heart, today and always, I wish all of us with invisible illnesses a compassionate community and a real cure. If you're well, rejoice in your health, know that tomorrow you could be one of us, and please help us raise awareness of M.E., today.