Re: AF and CFS- same or different?
I think the general consensus from ME groups is that it should not be combined with the term CFS.
Chronic-Fatigue-Syndrome refers to a range of symptoms that dosent have a clear testing protocol, ME does according to Hummingbirds.
http://www.hfme.org/
They even go on to state the
Chronic-Fatigue-Syndrome is generally a wrong diagnosis in most diesease, its basically what it becomes because the practioners are not skilled enough or have the funding to look further into a paitents condition. I dont really fit a
Chronic-Fatigue-Syndrome catagory...there are so many categories that we fit into, no wonder you have quite a few labels under your belt.
They say CFS is more of an immune related disease, hence the lymph nodes things. My lumph nodes have actually only started coming out now and again of late..somedays I can almost go through an entire flu scenario in a day, but havent been actually 'sick' in years. There is alsothe concept of a nervous breakdown. I read this the other day..
http://www.nomorepanic.co.uk/showthread.php?t=88987
Dr Lam would immediately denote this as AF, but she didnt, she didnt spend a fortune on supplements and consultations, took a course of SSRIS, resting, looked after herself and got back on her feet in six months.
Unfortunately the wellfare system is terrible for ME and CFS in this country also, and even more so for terms such as Dysautomia. I have yet to explore it further till I actually get a dianosis, but from what ive researched its like getting blood from a stone. They make you come in for assesment, the office is always very far away. Basically if you can make it it to the office (which you have to otherwise your claim goes bye bye) then you can walk a certain amount, so instantly you have been marked down on severity. For example, my father had his spinal cord butchered by a surgeon years ago when fixing a slipped disc. He could no longer walk, the surgeon said that was all he could do for them. They sold their house to pay for a private operation to give him some mobility. Ten years on, he can walk to the end of the street and back, they took his benefits off him because that means he for example could work behind a till in a Supermarket for two - fours hours a day. He is 65 and in chronic pain 24.7.
We have to pay for pescriptions. I tried to explain to someone that I cant go on Job Seekers Allowance because I have to be acitively seeking work, and I can barely walk for gods sake. They told me to get pescriptions I have to be either on JSA or Disability, but disability wont help me because I have no diagnosis and therefore to tell., no illness. Its the black ether unfortunately. God knows what Im actually meant to do when my savings run out, I literally have no options whatsoever. Being homeless in cold old England in this condition will be brutal. How do you afford the rent if you dont mind me asking? does the goverment pay for that?
Like you I dont want to just be taking medication for as long as I live, but in the olden days thats what people would do and live fairly decent times. We now seem to put our hopes in ND's that want to sell us an idea, a concept, a set of sythetic supplements that will make us better. No one has ever really gotten better, some are 'on there way'.but ive never heard of a severe case like ours actually getting better by drinking gallons of vitamin C!