Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Im still yet to hear of anyone with a pretty full symptom set (to definately confirm ME) who thinks they have returned to their full health with a year or so under their belt where they did not need to keep taking drugs or pacing their energy expenditure - bearing in mind that I *want* to find people like that! that would be the holy grail. I found one woman on youtube but then she put her ME down to being a candida related thing and almost seemed to say that it was the cause of everyones CFS , all the other promising ones either lacked key characteristics of CFS or quietly mentioned towards the end of their vids that they do not have the energy they used to despite having ways to return to work and normal life. pacing seems to be a constant
xchocoholic and yet celiac disease is one of those that should be ruled out before a diagnosis of ME is made. Go figure.
xchocoholic and yet celiac disease is one of those that should be ruled out before a diagnosis of ME is made. Go figure.
I think it's good every now and then that this topic is discussed as this is surely why we primarily visit sites like this. I'm a man in my 50s and have had this since the 1970s. Obviously, in all this time, I have seen many different practitioners using different approaches. In my experience acupuncture can certainly help but it wasn't a cure for me. Now, if you search for cures on the internet you will find apparent accounts of success stories of people using techniques along the lines of Gupta training, Mickel therapy and the Lightning process. In about 2008 I spent my £550 and undertook the Lightning process. However, as I somehow manage to work full-time I found it basically impossible to apply the techniques and work. Now my point here really is this, with the topic we are discussing, would you not think that if there are any cured people out there from these approaches they would declare it on this forum. They seem to be everywhere else on the net so why not on here.?
Yes, of course celiac disease should be ruled out, and a lot of other things ... but you can't do any tests, and you definitely can't get them paid for ... have you got the cash? There is a real problem that a disease diagnosed by exclusion does not always have the necessary tests funded by insurance, and doctors are often reluctant to order the tests even if they are funded.
Yes, of course celiac disease should be ruled out, and a lot of other things ... but you can't do any tests, and you definitely can't get them paid for ... have you got the cash? There is a real problem that a disease diagnosed by exclusion does not always have the necessary tests funded by insurance, and doctors are often reluctant to order the tests even if they are funded.
u should have sent them onto your old doctorMost of my ex doctors preferred to order tests that would show that I'm not sick. That's my impression anyway. One example is a doctor who ordered an echo-cardiogram even though I have no particular cardiac symptoms. I believe her plan was that the echo would show heart-wall thickening, so she could continue to lecture me on "controlling my hypertension", which I don't actually have, and pressure me into taking blood pressure pills, which of course would've made my POTS much worse.
The EKG came back normal. When I insisted the doctor needed to keep looking for what's wrong, she fired me. And the feeling was mutual.
When I finally found a real doctor, the tests indicated I have a chronic viral infection and a chronic bacterial infection, as well as abnormal NK cell counts. These are tests that I asked for - for years!
I have a step-cousin-in-law whom I've never met, but her mother said she was diagnosed with CFS (and was quite disabled by whatever it was, at least), and it was essentially cured by having a pacemaker implanted.
Since cfs is an umbrella term it's impossible to say
if people have been cured. Many were dx with cfs only to find
out they had something else. And since many of us have orthostatic
intolerance, it's hard to tell if we have cfs since merely being upright
removes the blood, etc from our upper bodies.
The nih states that celiac disease is being misdiagnosed as cfs
and that 97% of celiacs are undiagnosed. That leaves a lot
of room for mistakes.
Then there's Lyme, heavy metal poisoning, gluten sensitivity
with or without celiac disease, etc etc.