"CFS" as a diagnosis in light of current research on xmrv etc

[xrayspex]

What are your opinions on whether its a good idea to have the diagnosis of "CFS" in your medical file as of today going forward? I had imperfect (for me) dx of "fibromyalgia" for years and more recently a mainstream doc who is my newer PC who is open minded on CFS put that diagnosis too in my chart, but if anything I think it actually made it harder for me to get reimbursed on some stuff when I had private insurance and may have contributed to docs in the system who dont know me doing more of a negative stereotype ahead of time, so I am not seeing it as nec. a bonus, not sure if it would be good or bad if had to apply for SSDI, although I know women who have gotten SSDI in last 10 years based on that dx.

I just don't want to end up in the "crazy" camp if cdc keeps one for the peeps who don't have xmrv as I don't know if I have that at this point.

so, yay or nay, keep the CFS dx or ask him if he would ditch in favor of neurally mediated hypotension or some more beneign thing?

 

[Tammie]

In general, when it comes to applying for SSDI, symptoms and how they impact your life matter more than diagnosis.

The records your Dr keeps are considered most important with regards to these, but your own records and the testimony of family, friends, and co-workers can also help a lot.

Also, having several diagnoses (provided they are accurate, of course) can help. You don't just chose one to base your application on. So, in other words, if you do have NMH and CFS, you can put both on the application.

Of course, there are always going to be people who see CFS and automatically dismiss it as a psych diagnosis and that could possibly hurt your ap......it is possible to get SSDI based on psych illnesses, though (I mean illnesses that are truly psychiatric in nature)......still, according to the guidelines for getting SSDI, having CFS diagnosis should not make or break your case.....it is really much more about what you are physically and cognitively capable of doing.

 

[xrayspex]

thx Tammie
guess this isn't on majority of peeps minds
but sheeeit, just found am xmrv + today so guess I don't care as much if they leave the dx on there, altho whose to say yet how xmrv will pan out for us politically yet.

I guess besides disability questions I just wonder if in U.S anyway it hurts or hinders in getting care to have the "cfs" dx in med chart. perhaps that question is in transition. I don't know if DSM is still wanting to make it a psych dx or whatever.

 

[taniaaust1]

Im in Australia and how it works here for SSDI is as tammy said.. it isnt so much the diagnoses but based on what you can and cant do. The more symptoms and issue you have thou, the better it can look as each one written will be included. I'd suggest to make sure you have all the things like NMH etc on your file .. and if you have got CFS/ME there, that dont take away from FM as that should be still there too.

but yeah.. you may strike biased with the CFS/ME thou you shouldnt right at this point of time seeing you just got a postive XMRV+ as no one can say it isnt serious.

 

[xrayspex]

thx taniaa
well maybe mclure and cdc won't think its serious eh

 

[usedtobeperkytina]

Social Security recognizes the biological abnormalities in CFS as they required some test to show abnormality to prove limitations, from my understanding of reading the SS document with requirements.

Also, I know all about the ME vs. CFS disagreements. But, the studies finding the virus are finding it in the "CFS" patients. Also, we now have a few viruses named after CFS, although this will likely change.

Of course, insurance and most doctors know nothing of this.

So I can't recommend anything specific either way. Just wanted to share some facts that might help.

Tina