so unable to advocate for themselves effectively, particularly in the arena=
of fundraising.(1) Except I did not find my thoughts particularly enlighte=
ning, even as I have continued to feel there are good reasons to explain ou=
r lack of political and financial initiative that I could not quite articul=
ate.=0A=0AHowever I was reading Cort Johnson recently recount the experienc=
e of being overrun by Multiple Sclerosis patients on Capitol Hill a few yea=
rs back while participating in a CFIDS Associations Lobby Day.(2) The compa=
rison of MS and ME/CFS patients provided me with a lens through which to ex=
plore -- and answer -- the question of "where is everybody" with what feels=
like far more satisfaction.=0A=0ALet me begin by noting that while there a=
re more people who have ME/CFS than who have MS, only 18% or so of ME/CFS p=
atients have been diagnosed. Thus there are actually more diagnosed MS pati=
ents than diagnosed ME/CFS patients.=0A=0AMS patients have a variety of eff=
ective treatments to choose from (that are covered by insurance companies) =
including anti-virals, interferons, and yes, CBT, including consultations w=
ith cognitive psychologists who, through rigorous psychometric testing, can=
identify for the MS patient his or her cognitive strengths and weaknesses =
and train the patient to compensate for those weaknesses.=0A=0ADoctors, ins=
urance companies, families, friends, and communities at large all consider =
Multiple Sclerosis to be a legitimate, serious, and debilitating disease, m=
eaning that friends and family members are much more willing to advocate fo=
r MS patients.(3) Indeed as a child I can remember participating in the ann=
ual MS Read-a-thon after reading about it in the back of a young adult nove=
l I had received.=0A=0AThe impact of this legitimacy on patients cannot be =
overestimated, even if most MS patients don't even know they should appreci=
ate it. There is no internalized doubt and stigma ("maybe I just really can=
't handle stress", "maybe I am just weak-willed"). No internalization of an=
overwhelming narrative that invalidates the seriousness of their illness (=
"I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so=
I shouldn't bother the doctor"). No shame and fear that by admitting their=
disease - or simply stating the *name* of their disease - they will immedi=
ately be labeled histrionic, lazy, and/or hypochondriacal.=0A=0AAnd most im=
portant of all, patients with Multiple Sclerosis do not have post-exertiona=
l malaise. While it is true that chronic fatigue is a very prominent part o=
f having MS -- so much so that some researchers even refer to this aspect o=
f MS as "chronic fatigue syndrome" -- MS patients do not appear to have dif=
ficulty metabolizing oxygen. Their VO2 max levels do not drop significantly=
after engaging in aerobic activity, saving them from the overwhelming leth=
argy and apathy post-exertional malaise produces.=0A=0AMy best friend and g=
odfather, Talal, has MS. Because he began Avonex (a form of Interferon B) a=
nd Amantadine (an anti-viral) within a few years of symptoms appearing, he'=
s still in his PhD program. His primary symptoms are fatigue and cognitive =
problems -- brain fog, problems with short-term memory/working memory, orga=
nization, etc. While he gets tired easily and struggles with sequential tas=
ks like recipes, he does not have problems with post-exertional malaise. He=
can still read methodology (i.e. dense, esoteric text). He can still write=
academic prose. He can still teach and make a monthly salary. He can still=
work an 8-hour day. He can even help friends move with his pick-up. He suf=
fers little to no pain. He walks unaided. He goes to the gym most days. He'=
s currently in the Middle East doing research for his dissertation.=0A=0AI,=
on the other hand, had to drop out of my graduate program. I live on $674 =
of SSI + Food Stamps. For much of the last five years I have not been able =
to read books (despite owning 1200+), though my reading ability has been im=
proving since increasing my dose of Acetyl L-Carnitine substantially and st=
arting D-Ribose. Methodology, of course, is still out of the question. I to=
o have a hard time following a recipe -- or even just making myself a bowl =
of cereal in the morning -- because my working memory and sequential taskin=
g are poor. I walk with a cane because my balance is poor (some days I feel=
almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vic=
odin (Lortabs) for constant, burning pain. I'm only awake in the evening. I=
have to have someone come in and do my laundry, cook my meals, and help me=
bathe -- someone who may or may not understand how sick I am. The only wri=
ting I can do is cobbled together blog posts and journaling. My
state's form of Medicaid does not cover treatment for CFS, though there is=
no real standard of care anyway and my doctor knows almost nothing about m=
y disease. I haven't been able to drive for four years now both because of =
pain that's unrelated to CFS and because of poor spatial perception that is=
most certainly related to CFS. My boyfriend lives in the UK but I cannot g=
et on a plane to go visit him there because I absolutely must lay down afte=
r 3-4 hours, while the flight just to the East Coast is 6 hours, with the U=
K another 5 hours after that.=0A=0AIt is true that Talal is not necessarily=
the average MS patient, nor am I the average ME/CFS patient. But I do thin=
k the very differences in post-exertional malaise, legitimacy and access to=
treatment are essential to explaining why MS and ME/CFS patients differ in=
their abilities to advocate for themselves.=0A=0AUnfortunately we cannot g=
et legitimacy and access to treatment without advocating for ourselves. Exc=
ept we cannot advocate effectively for ourselves without legitimacy and acc=
ess to proper treatment. I still do not have an answer for how to overcome =
this insidious conundrum. However I am most certain the answer is not to bl=
ame the victim, i.e. ME/CFS patients.=0A=0AOriginally posted at http://tiny=
.cc/50QQg=0A=0ASee also: "Found" at http://tiny.cc/hqrTl=0A=0A_____________=
_______=0A(1)See: http://tiny.cc/g9v0v=0A=0A(2)See: http://tiny.cc/ehcRd=0A=
=0A(3) Especially mothers. Some of the staunchest and most effective advoca=
tes for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaug=
hlin =E2=80=93 to name a few). Indeed my own local support group fell apart=
when one of our members left =E2=80=93 taking her mother, our group facili=
tator, with her. The CFIDS Association may well have made a serious strateg=
ic error in not addressing Pediatric ME/CFS more aggressively from the begi=
nning, even if adults are more likely to develop ME/CFS than children.=0A=
=0ARead about life behind the surface at http://behindthesurface.blogspot.c=
om=0A=0A=0A
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