News from WPI symposium: Name change to be proposed for XMRV

[BEG]

Haggard, H-grad, Hagrid, whatever as long as it is no longer:

C F word S!

 

[bullybeef]

It will also mean the end of CFS, ME, and any other named definition of what we suffer from. Being HGRV+ means we won't, and have never had ME etc!!!

 

[urbantravels]

New stories are published on the internet on Tuesdays but I still haven't been able to determine when the print issue comes out - anyone?

The PRINT PUBLICATION date is Tuesdays. Stories get posted online throughout the week.

 

[Daffodil]

i think the lyme community is pretty huge..i recently joined a lyme yahoo group and get like 100 emails a day

if we joined up with the autism group.....imagine the possibilities

 

[King Frog]

HGRAD what happens when they find a second one which im sure they will down the line . hmm think i prefer xmrv to be honest can you imagine telling folk you had HGRAD,

it doesnt roll off the toungue does it . Id rather have mikovits nuero immune disease thankyou very much that way it distinguishes from the link with prostate cancer

I'm with you on this name. HGRAD? No thank you! Mikovits Neuo Imune Disease, love it. <ribet>

 

[Daffodil]

HGRAD ..people will call us haggard..worse than fatigued!

 

[leaves]

Can they just do that? Change the name? Are the people that originally discovered it in prostate cancer ok with that?

 

[urbantravels]

Holtorf Clinic will be buying "HGRAD" and "HGRV" Google Ad keywords in 5...4...3...2...

"Suffer from HGRAD? We Can Help!"

 

[richvank]

Something just jogged my memory...does the Infectious Disease Society of America have a stance on CFS? Like, "bugger off, CFS is not an infectious disease"?

I seem to remember the one ID doc I saw saying something like this. (In the course of telling me that CFS is a "wastebasket diagnosis" and "not fashionable" any more.)

Oh, the whiplash all these people are going to get. How very interesting it will be if I find myself BACK in the office of that ID doctor, the one who patted my shoulder and told me I'd feel much better in six months if I got my anxiety problem seen to...

I actually liked him. He seemed like a smart guy.

Hi, urbantravels.

I'm not aware that IDSA has a published position on CFS. I think the infectious disease doctors are aware that people with CFS have a variety of infections, but there has not been good evidence that it is caused by an infectious agent. Initially, it was thought that the Epstein-Barr virus might have been the cause, but this was disproven. Then there was the earlier work on retroviruses, but this work was terminated. The socalled "stealth virus" was another one that got some attention for a while. Since then, I think the infections have just been viewed as resulting from the immune system dysfunction. To find a new retrovirus that might actually be causative is a major development.

Rich

 

[pollycbr125]

Holtorf Clinic will be buying "HGRAD" and "HGRV" Google Ad keywords in 5...4...3...2...

"Suffer from HGRAD? We Can Help!"

Lol yeah your right and all the other snakes will be following suit

 

[pine108kell]

i don't know. good question. it [lyme] certainly gets a lot more media attention than CFS does.

Lyme does get more attention than CFS, but chronic lyme sufferers (and there are a lot) are also ridiculed and demeaned to only a slightly less degree than CFS. Lyme doctors are driven out by insurance companies. Lyme symptoms overlap with CFS and some people with CFS have chronic lyme and others don't know which disease they have. It is a very large community and its not been a whole lot better for those diagnosed with chronic lyme versus CFS. Both have been a "dead-end" dianosis for most. Many of those with chronic lyme and not getting better will probably be looking closely at XMRV, or whatever the name will be, as Dr. B. is.

 

[Jenny]

It's very significant that Burrascano is interested in all this. He's considered to be one of the most experienced Lyme clinicians.

Interestingly he's now saying that chronic Lyme is a 'completely different' illness from more acute forms of Lyme disease - he says it's always neurological and involves serious immune dysfunction. Sound familiar? I haven't heard him say this before - up till now his view has been that Lyme is Lyme and most cases are treatable with abx. It's worrying though that he says that if you don't exercise you won't get better!

It would be a great step forward if Lyme and ME doctors and researchers could work together.

Here are some notes of a recent talk by him.

http://www.mdjunction.com/forums/ly...6-dr-joe-burrascanos-july-2010-nutsbolts-talk

Jenny

 

[pictureofhealth]

This retrovirus has certainly been stealthy.

I think 'XMRV' certainly had more media appeal, 'sexier' etc - but then that's not what its about is it?

H GRAD has sobered me up a bit.

 

[Daisymay]

Thank so much Rich for this, strange isn't it how we have CFS, autism and chronic lyme all associated with HGRV, all diseases which the medical establishment and governments have ridiculed as not existing, now all we need is GWS to have it too, which seems quite likely.........

 

[guest]

HGRAD what happens when they find a second one which im sure they will down the line . hmm think i prefer xmrv to be honest can you imagine telling folk you had HGRAD,

it doesnt roll off the toungue does it . Id rather have mikovits nuero immune disease thankyou very much that way it distinguishes from the link with prostate cancer

I had the same thought, what if they find a 2nd gamma-retrovirus? Maybe it's just the hypernym and they will give each virus its own name.

 

[Sasha]

Maybe it's just the hypernym

Oooh! New word! Love it! :Retro smile:

(Sorry, Diesel, I think I'm a bit overexcited today)... :Retro redface:

 

[akrasia]

With Dr. B sounding so excited, it really seems that he thinks lyme is closely related to, or caused by, this HGRAD illness.

I know I am stating the obvious, but that is big big big big news.

If this fight can include CFS and Lyme patients in ONE effort, we just doubled our army.

Some of us have both diagnoses, and there are dismaying parallels between the way the authorities have persecuted both patients and doctors in both illnesses. CFS had Strauss, Lyme Disease, Steere.

As I said to my LD doctor, different apartment, same party.

 

[Sunshine]

If this HGRV virus, is the 'new' name for XMRV it may be very good news.

The CDC would/will bargain on this new name.

Their zero percent XMRV study in CFS will be forgotten about and the CDC were thus victorious in their eyes (ego trip much).
The claims CFS is nothing to do with XMRV or a retrovirus is accepted by the public and medics (ego trip much).

=

No one from the CDC goes to jail yet. (christmas bonus much).

What the WPI and patients get out of this, is maybe, just maybe if we use the name GRAD (not ME CFS) then CDC will 'join in' and do a replication study of GRAD on GRAD. Once a new GRAD is first done (not GRAD on XMRV) too many egos again. XMRV has to die in the eyes of the CDC and ALL government health agencies, especially in the UK. This could mean that the CDC could theoretically help patients with GRAD by late 2011/2012 and start doing their job for neuro immune ME/CFS patients as a Centre for Disease control (CDC).

The public trust the CDC and have no idea about the politics and corruption. CDC is happy with a name change as it 'keeps' CFS which is terrible news for those XMRV/HGRV negative. Having said that people with 'true' neuro immune CFS will all be positive as it will be shown to be causative in the near future as we will have a unique immune profile. This unique profile + XMRV (HGRV) = neuro immune ME/CFS.

The psychiatric profession has way too many customers, (patients) and way too much influence and power to just flush CFS label down the toilet. CFS will remain, and GRAD could become a new disease causing infection that the CDC can boast they are world leaders in, world beaters in, researching and advising the public all over the world. (ego trip much). We, the patients, know GRAD is actually neuro immune ME/CFS, but the public won't care or know and health profesionalls due to being professional won't use the name ME/CFS again for those with XMRV/HGRV.

I am hoping this it what this possible name change of XMRV to HGRV means. It's very strange it's suddenly come out like this, too much of a coincidence now the XMRV WPI replication FDA Alter paper's out (NB: for scientists).

Deleting ME CFS, It's immoral as the CDC get away with what happened to us and all the people who have died get forgotten about, yet to change the power structures it's the only way the CDC will come to our aid. The deal on the table (now or in the future) will be a name change and no mention of what the consequences for public health was by insisting that ME & CFS were all mental disorders treated with CBT/GE/Pacing/Anti Depressants/Family Counselling/LP etc etc.

GRAD label (from ME CFS), is a perfect get out clause for the CDC and a perfect way to inject research funding into neuro immune ME/CFS with a new label for the WPI. I am sure if and when this happens, both sides will be happy with the compromise, if somewhat miffed. At the end of the day, it will take a compromise to allow real change to happen and we'll have to accept it.

Think about it, HIV/AIDS that soon killed 50% of people outright who weren't treated never had the label monkey virus, indeed they only got a 'syndrome' label. AIDS. At least GRAD (caused by HGRV) is a disease and not a syndrome which is an upgrade for us. CFS remains a syndrome and the CDC's pet remains unharmed, unlike the people with the label CFS.

The 100 million dollar question is, does CFS exist, and why is it even needed. CFS contains a huge amount of undiagnosed physical and psychological illnesses and it's a lovely way for governments to sit on their hands, regardless if people have XMRV or not. It means unexplained, remains unexplained. Maybe for neuro immune ME CFS though, we are going to have a reason, finally.....and recognition...finally.

If this forum was popular before on breaking news, it just went thermonuclear! Hats off and thank you to all you budding journalists out there helping us all out.

 

[mentalist]

sunshine makes sense to me.

 

[Stone]

First reaction: WOW!!!!!!!!

Second reaction: How in blazes are you supposed to pronounce "HGRAD"?

I'll echo that 'WOW!!!!!!' At first glance I almost want to pronounce it "HAGGARD". Close but no cigar.

haggard (hgrd)
adj.
1.
a. Appearing worn and exhausted; gaunt.
b. Wild or distraught in appearance.

HGRAD is a far sight better than many of the other options. Where do I sign?