I guess at the end of the day the WPI and John Coffin are looking out for patients who may not be aware that the finger prick test is not the be all and end all of medical science.
Myself included forget that people who are sick - are not necessarily mentally advanced, but mentally backwards. A patient once said to me in hospital, that don't assume sick people are nice or have any interest in their illness.
(I never thought of that before this moment). I assumed all people with CFS ME are bright, genuine, wholesome perfect people, who consume more research that breakfast cereals -naturally that's not true and lots of people are just as horrible, selfish, rude, stupid and mean as healthy people - and that's just me.
Which probably explains our saviours at the WPI realising this and not wanting people running out and stabbing themselves with needles expecting a miracle by e-mail. Many people would though. (Man is essentially dumb as well as brilliant).
So the docs at the CFSAS (possibly) publically trashed it in excessive ways, to make sure people wait (en mass) to use a verified certified test - which logically makes sense. And (vitally) validates the seriousness of what the WPI and friends have found. I'm sure it infuriated them a private lab, had designed a fly by night test for an inflated price and offered it just like that - wham.
Looking at in from their eyes, I too would be rather annoyed! Us patients, and the WPI have corrupt people making sure their patients will not test positive to XMRV, and if this co-operatives test has a 1 in 3 hit ratio - then tonnes of people will be told they don't have it, when they do.
We understand this, but we don't
eat scrap metal.
But for those of us aware (intellectually and spirutually) this finger prick is just a first step, I see no harm in us parting with what little money we have.
I don't subscribe to the bizarre opnion of some PWC's that they've waited 20 yrs for a test, so they can wait another year. I'm sure there are people (tragically) all over the world who'll jump into a river tonight, who cannot wait. This is the nature of a public health scandal that is 'CFS' a derogatory term in my opinion akin to the N word. (Oneday, no one with CFS will ever used that word - due to the terrible memories of people treated like a Jew in Nazi germany, or a homosexual in 21st century Africa). CFS was invented by a denial of the patient as a legitimate human being complaining of legitimate suffering. So I detest the word CFS, yet we used it - because others do!
I so hope will we look back very soon, aghast that when we said that word 'CFS' in a hospital ward, the staff would literally fall silent, then audibly 'tut' or 'sigh' - and treat you badly. Things are/were that bad. These will be our memories.
To defend us lot apparently being idiotic and blowing dollar bills (or pounds stirling) we are very sick and begging for the most basic help. Our mentors (thank god they exist) don't live off state welfare payouts or put swipe cards in electrical boxes, and don't stay up till the sun rises trying to stave off a panic attack because helping you validates or 'medicalises' CFS - or is that just me?
I have in writiing in my medical records, orders to 'de-medicalise' me.
How crazy is that? Also not to talk to me, and to write down what I say.
Is that even legal outside a fascist state? Apparently so. Even without consent. This is our life, not the life of fortunate people who get anti-viral drugs and tell us all they feel so much better. Great for them, but what about us? If I felt so much better, I'd go rescue other people - not tell the sick people I'm so much better!!!!
I think they have no idea that's it's perfectly legal in socialised medical systems to deny people basic medical care for ME CFS on the basis you're a hated patient. Simple as. After all, no matter how on our side the WPI are - these people get what they want medically as they have power (they're medics), or they're wealthy or they can stand upright, travel, and physically go into a clinic.
I've seen posts here about people getting on trains to go and see the best docs in the world. In their situation - I would too, who wouldn't? For 99.9% of us it's a fantasy, and ofcourse (ironically) the healthiest patients (sans ariving in an ambulance with paramedic) get to see these specialists.
The people half dead who can't speak, eat, or even open their bladder voluntarily are certainly
not going on trains and see nothing but hell. Most of these terriblly sick PWC with extreme disease won't make it before XMRV is validated as causing ME CFS. It won't be of course. (ME CFS means nothing to those who stand on our heads and pull our ears to the ceiling).
XAND label - is the escape. The day you can hold you head up (or eyes open) and feel safe, amidst a war zone atmosphere of incoming shells.
I think about these people, people way way sicker than me who have to use sign language to communicate and put tubes up the genitals and noses.
Imagine having a tube filling a bag of human waste, and being told you suffer from CFS - which is your fault and you can be cured in 3 days, or by
saying the word, No. On that topic I got a magazine today on ME CFS, from my local support group. It's running an advert saying you can cure ME CFS in 3 days, and another one for the GUPTA process that says they can be more honest, now they don't think the have ME CFS. WTF?! I swore very badly indeed.
In this state of affairs, or even not as sick - the co-operative tests would be diamonds glistening on a pristine lilly leaf, even if when grabbed, the apparent jewel is a plastic replica.
Myself and others, are denied home oxygen or other basic medications, electric mattress lifters, pain medication, respriatory support, bath/shower aids - and, ironically, access to a counsellor to tell people how you feel).
People outside social medical systems who are fortunate, just pay the $$$ and get the service. Addmitedly you need dollars to be able to get it in the first place!!!!, and most PWC's
don't have money. But there are people, I read threads all over the place about people injecting themselves with anti-virals. For most of us, that's medical porn. So we put faith in throwing a paper plane into a hurricane and hoping it lands safely, for $400.
Highly unlikely, but not impossible. Impossible becomes expected when your life is impossible and finished.
Still, I think we rebels can watch our own backs for now and be sensible with any possible result we get, and remain calm and not end up at the GP's getting even more hypertensive than usual.
