I'll try to join the discussion, although I'm in the US and I've been stubborn and lucky enough to find my way to Dr. Kogelnik's clinic, after 30 years of living with ME.
Being originally form Italy, a country with a similar NHS to the one in the UK, and because I'm in contact with Dr. Carlo-Stella an italian immunologist who has done quite some research in the field of ME/CFS (blurring the lines between genetics, immunology and rheumatology) and has been in private practice for the last 3 years or so, I think I understand pretty well the horrible and inhuman abandonment that PWME have been forced to live, day in and day out, by GPs and our awful health systems.
It is pretty clear that PWME are victims, basically anywhere and everywhere they happen to be born, live or move. Some of us have a slight advantage. I consider myself one of the more "fortunate" ones, based on the fact that since 2011 I've found an ME specialist, somebody with a young bright mind and spirit of making things move for his patients, a doctor with very few equals. I always tell Dr. Kogelnik that we are in the right place at the right time. I'm certain that the long awaited paradigm shift is about to arrive.
I still need to fly or be in a car for several hours to go see him, but considering @
justy's and most of my fellow sufferers situations, I'm pretty "lucky".
If I was still living in Italy, I would have been diagnosed by Dr. Carlo-Stella (she is one of the co-signatories of the 2011 ICC), but she would have her hands tied by the Italian NHS and would not be able to prescribe some treatments, such as anti-vitals ( for example Valcyte which I'm currently taking because of sky high IgG's to CMV, HHV6 and EBV). To put it simply I would have to have an acute infection of CMV, when what I have are multiple chronic infections of all the herpes viruses plus a plethora of other intracellular pathogens. Even my longstanding abysmally low NK cells function would not qualify me for immunoglobulins treatments. Maybe some over the counter immune modulator would be prescribed.
Was I still living in Italy, I would be lost, based on the fact that I don't have so far a real and clear cut autoimmune picture, apart from a Sicca Syndrome diagnose (achieved through my old rheumatologist at Ucla and by participating in the international clinical SICCA clinic at UCSF) a mildly elevated ANA (speckled, which apparently is quite common in PWME) and a handful of other diagnoses that all point toward autoimmunity, but are not the smoking gun, basically I would be screwed!
Was I not in the US, close to OMI and able to pay out of pocket for the visits there and some off label treatments, I would simply fall through the cracks.
Like the rest of us here on PR and the millions PWME around the world we need a major change in the way our disease is perceived, studied, researched and treated:
- We need a better naME, because it's evident to me that CFS is a symptom, fatigue is a symptom present in many many autoimmune and non autoimmune illnesses
- We need acknowledgement form the powers to be that ME is a serious chronic multi systemic disease, in which inflammation is very much present as well as immune dysfunction (still don't know which comes first
.
- We need centers of excellence COE in every possible country around the world (Dr. Dan Peterson in his talk in front of some of Sweden's MP in 2011 has stated that ME is present everywhere you look for it
. Prof. Montoya is a strong advocate of COE, he has been working tirelessly on our behalf at Stanford and advocating at the CDC and CFSAC here in the US.
- We need more young and bright minds attracted to the shores of ME (Ryan Prior is doing this with The Blue Ribbon Foundation)
- We need more Prof. Davis and Ian Lipkins, Jonathan Edwards, Fluge, Mella, Bansal, Blomberg, Hooper, Newton, Marshall-Gradisnik etc. etc. etc. (too many to name for my ME brain, but certainly still too few to do the research and translational medicine that is desperately needed).
- We need powerful lobbying (easier to say than to do, when you are a bunch of very sick, invisible and destitute lot of sick people …), as the wonderful Llewellyn King has been saying.
We are not there yet, but we are taking the first steps. Keep calm and fight on, we are slowly slowly getting where we needed to get many years ago.