Date:   2/22/2013 4:20:15 PM ( 11 y ago)
Hits:   1,086
URL:   https://www.curezone.org/forums/fm.asp?i=2038640

Mikey,

Even more confusing is that they say ME is CFS? I know that some people with Chronic-Fatigue-Syndrome develop brain lesions and others don't. Is ME something completely different? I have not been able to find any information that doesn't lump them together.

I have been diagnosed with CFS, but here in the States it's really hard to get disability benefits even if you have something much more documented like MS or Lupus. They make you shell out all kinds of money for an attorney, and even then it's not a guarantee.

Since Chronic-Fatigue-Syndrome is so difficult to "prove", they won't give you benefits unless you have the more severe symptoms like constant swollen lymphs or subclinical Addisons.

I hate that they call Chronic-Fatigue-Syndrome "tired all the time". I know many others including myself that have been diagnosed with it who suffer through hell. So far, conventional medicine has labeled me with CFS, Fibromyalgia, and Dysautonomia (particularly RSWS and SIADH), yet still can't get any benefits other than food assistance. They won't even give me Medicare. Here, they also force you to pay for all the prescriptions and be on them for an entire year before they will even give your case a glance. Horrible prescriptions like Lyrica, Cymbalta, and Florinef that have awful side effects.

It's so difficult to draw the line between these "mystery illnesses". So far, all they tell me is that I have a dysfunctional autonomic nervous system but they don't know why. Then the alternative docs diagnosed adrenal exhaustion, which is a bit more solid. I know they are all related to or caused by one another. I guess its back to the chicken or egg scenario.

I hate to say it, but actually getting diagnosed with a "proper illness" can help the situation, or at least keep them from trying to send you to the psych ward. Hopefully your benefit rules in the UK are better than here!


 

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