Re: Re: Discovery of XMRV retrovirus in chronic fatigue syndrome

[Guest guest]

Yeah, I'm so over it as well.

I recently posted here about a San Diego immunologist for whom I had very high hopes. Turns out Dr Jeckyll became Mr. Hyde when in the exam room alone with me. Most humiliating and frustrating doctor's visit I've ever had, and I've had some pretty bad ones.

He basically said I needed treatment for depression, not a physical illness (despite a huge folder of evidence to the contrary and dxs of chronic infection). He even told me there was no such thing as "chronic infection" (although on the previous visit he said he suspected a chronic underlying infection). I was so shocked and angry at what he was saying that my eyes teared up, which he used as conclusive proof that the root of all my health problems was mental. (clearly he has no understanding of common female anger reactions.) His rationalle was that everything I was dealing with health-wise would only naturally cause depression. But, um...didn't you just say that I'm sick because I'm depressed? Or is it I'm depressed because I'm sick? When I told him I knew the difference between depression and normal frustration because I'd been depressed many years ago, he told me that confirmed

his dx because I "had a history of depression"!!! Omigod!!! This after talking to him for all of 30 seconds. GRRRRR!!! Basically, he was angry that I didn't obediently agree to the sinus surgery he referred me for. I guess he felt the need to belittle me rather than calmly discuss the pros and cons of more sinus surgery.

I'd love to air-drop a ton of these articles all over his smug self as he walks out to his mercedes at the end of the day.

Please, if any of you thought about making an appointment with this San Diego immunologist, talk to me first and save yourself a huge disappointment.

penny

From: sreed57 <sreedp@...>Subject: [infections] Re: Discovery of XMRV retrovirus in chronic fatigue syndromeinfections Date: Friday, October 9, 2009, 12:08 PM

This is so exciting, Penny. It cracks me up that the CDC is so concerned about it being in 4% of the healthy controls.... ..excuse me, I think the real problem is in our camp! I too am tired of being treated like an hysterical middle aged female in response to my devastating illness. It seems the only available treatment from traditional medical offices is condescension. I'm over it. >> Here's the NY Times article on the subject:> > http://www.nytimes. com/2009/ 10/09/health/ research/ 09virus.html? _r=1>

> And a whole list of major publications reporting the story:> > http://news. google.com/ news/more? pz=1 & cf=all & ncl=dANLiI0J4tW0 VZMDD9ozWdRfBN_ MM & topic= m> > The good news, the study is getting lots of attention. It's a significant finding.> > The bad news, it's hard to treat viruses. But then, as we've learned, it's hard to treat entrenched bacterial infections and their biofilms as well.> > Viruses and bacterial infections both cause the same kinds of immune response and inflammatory symptoms. I hope science starts to realize the obvious link between chronic illness and infections of all sorts sooner than later. > > Mostly, I hope that what appears to be a

big step in acknowledging CFS as a real illness is sustained, and research continues, after the attention to this new finding dies down. > > It would be nice to walk into a doctor's office and have your illness acknowledged, rather than ridiculed, which happens too frequently and happened to me recently.> > penny> > > > > > >

[Guest guest]

I wholeheartedly agree with everything you say. And let's hope that if it's true the CDC's only concern is for the 4% of the healthy population that carries this retrovirus, that it will be enough to get them to find an effective treatment that the millions of us who don't matter to them, will benefit from too.

It's mind boggling that so many of us present with severe fatigue, joint pain, headaches, etc. and the mainstream still wants to categorize us as nutjobs. Just easier, I guess.

I truly pray that this is the big tide changer that we've all been hoping for.

From: sreed57 <sreedp@...>Subject: [infections] Re: Discovery of XMRV retrovirus in chronic fatigue syndromeinfections Date: Friday, October 9, 2009, 1:12 PM

What a moron. I think the biggest issue in health care reform is dealing with physician's ego's. They don't like it when we don't bow down and unquestioningly accept their 5 minute assessment of our decades long issues. Thank God they are not all that way, but unfortunately it is a common theme in their professional "syndrome" which clearly keeps innovation out of their community and inadvertantly causes the alternative health care profession to thrive. If they can't find compassion for their patients perhaps they can drum up a little compassion and concern for their checkbook.All the best,> >> > Here's the NY Times article on the subject:> > > > http://www.nytimes. com/2009/ 10/09/health/ research/ 09virus.html? _r=1> > > > And a whole list of major publications reporting the story:> > > > http://news. google.com/ news/more? pz=1 & cf=all & ncl=dANLiI0J4tW0 VZMDD9ozWdRfBN_ MM & topic= m> > > > The good news, the study is getting lots of attention. It's a significant finding.> > > > The bad news, it's hard to treat viruses. But then, as we've

learned, it's hard to treat entrenched bacterial infections and their biofilms as well.> > > > Viruses and bacterial infections both cause the same kinds of immune response and inflammatory symptoms. I hope science starts to realize the obvious link between chronic illness and infections of all sorts sooner than later. > > > > Mostly, I hope that what appears to be a big step in acknowledging CFS as a real illness is sustained, and research continues, after the attention to this new finding dies down. > > > > It would be nice to walk into a doctor's office and have your illness acknowledged, rather than ridiculed, which happens too frequently and happened to me recently.> > > > penny> > > > > > > > > > > >

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