CFS Comorbidity in the medical literature?

[Guest guest]

First time poster --long-- long time patient(1977). Please excuse the rather

ambitious help I am asking the list for. I am here to try to salvage a bad turn

of events. I am on a short deadline and both my practitioners who were

researching this for me have fallen ill. Myself, I've just now been able to

spend part of the day out of bed after a 10 week very acute episode. I am in

and out of brain fog even to be able to compose this letter. I am especially

interested in hearing from any one who has ever been through the VA system

regarding CFS/ME or CEB.

Deadline:

After waiting 5 years, the Veteran's Administration scheduled me for a hearing

with 4 weeks notice and that hearing is Tuesday Dec 14th. That or wait another

year. I can submit medical literature as evidence. I am trying to get the VA

to accept the co-morbid conditions documented and diagnosed at the time of my

discharge but, not considered " rateable " . In fact, when I was diagnosed there

was no medical code for the condition and I am also trying to get them to remove

the substitute diagnostic code for " Lupus E " for the CFS/CEB.

Unfortunately, as I explain later, I am not getting medical assistance from the

VA for either treatment, referral, pain management, or documentation even though

they are my primary care providers.--(tonight a " foreign trained doctor " at the

VA ER refused to forward my insulin and diabetes refills to the pharmacy -- I

have to go to another VA hospital when I get where I am going) but I am trying

to suppress my incredulity about the effectiveness of rationed healthcare.

Anyway,the VA mis-coded me 30 years ago for " Lupus E " and in a Catch-22, I have

to " prove " to them that this is was a substitute diagnosis and needs to be

changed. I even had my primary-care foreign trained,contracted VA Doctor(sic),

tell me there was no such thing as CFS--all here know what he has his head stuck

up, but-- I digress.

I need a list and/or citation for co-morbid associations with CFS that have been

published in the 30+ years since CFS was recognized. I have read several lists

of co-morbid findings/associations --but I am unable to relocate and print out.

Specifically:

Swollen Uvula

Tooth loss/gum disease

Chronic Epstein-Barr

Chronic lower back pain

Chronic Sinusitis other than the faceomaxiallary and TMS(?)connection

Fibro. Myalg. (FMS)overlapping conditions

Demyelenation of nerve sheaths

Sleep Apnea/Disturbances

Liver Damage/Impairment long and short term.

Cytomegalovirus Infection in CFS/CEBVpaitents

Eye/vision problems

Hypertension

Diabetes

Effects on autonomic /endocrine regulation.

Urticaria/Hives/Rash

Organs affected in CFSpaitents.

Restless Leg Syndrome.

Reflex Distrophy Syndrome(RDS) or " burning skin sensations "

Stress levels and stress triggers for CFS acute episodes.

I have most of the commonly known associated conditons such as IBS, Headache.

Tender points but any and all links/ citations our guidence is invited. I've

three days to finalize this collection for presentation.

One other point: while the SSA determines if you are capable of " Substantial

Gainful Employment " (SGE) the VA has to make a determination of what % of one's

time, one are or are not disabled or impaired by one's condition. For what it is

worth, So they don't even parallel the SSA ruling regarding CFS and medically

observable/measurable finding.

Background:

When I was diagnosed in 1983 with a suspected immune complex disorder and

Chronic Epstein Barr infection it was a year before CFS was announced in the

literature. At the time I was under the 200th patient so diagnosed. So they

chose a similar condition Lupus for my diagnostic code. I've had to move

mountains to get them to understand that I don't have lupus and believe it of

not have to prove that I don't ave lupus and that I have CFS/CEB.

My onset was abrupt and after receiving a flu vaccination in 1977 where 90% of

my brigade(Ft Hood , TX) got ill with what then was diagnoses as " prolonged

mono " given the sophistication of medical knowledge at the time. Several of us

never got better. I went undiagnosed for 7 years. Several of my past symptoms

were more related to Guillain-Barré Syndrome(GBS)this was within a year of the

Swine Flu Vaccination debacle of 1976.

I have had 3 times over the 34 or so years where I was confined to bed a

majority of my days the better part of 18 months at a stretch--Rarely have I

been symptom free--For whatever that is worth to my fellow patients.

As you may surmise, I am miserable much of the time and surprise even myself

I've lived so long with it.

A direct reply to my email is best for me as I am on the road for the next 14

hours.

Regards and Thank you in advance,

Elton