Let No Man Cast Asunder….

The past few months have been trying on the patient community – my organisation itself has received emails from panicked patients asking “where do we go from here, is this the end”. My answer to everyone is to calm down and wait. Yes, we have been tested like we have never been tested before. We are being pushed to the limits but we will emerge stronger.

The barrage of media propaganda against us was merely the beginning – Professor Wessely and his colleagues at various psychological institutes reminding us that our disease is “their” baby to manipulate for their own means and that the suffering of the patients is just collateral damage.

Then the US Blood Working Group Phase Three failed to find XMRV/MLV’s in the blood of M.E patients. The original mission of the Blood Working Group was to design and coordinate research studies to evaluate whether XMRV poses a threat to blood safety.

The Department of Health and Human Services press release also added that W. Ian Lipkin, MD, at Columbia University’s Mailman School of Public Health is leading a separate study testing fresh blood samples from 150 people living with CFS and 150 healthy controls. Researchers will process, blind, and ship samples to laboratories at FDA, CDC, and WPI to test for the presence of XMRV, MLV, or related viruses.

Until Lipkin announces his results the jury is still out as far as I am concerned but if there is an issue of methodology that still needs to be cleared up then it needs to be sorted out now.

As stated by Dr Harvey Alter…

“Dr. Hanson has shown today how critical the assays are. When she tweaked her assay, she went from no findings to findings almost identical to the Lo lab. The diversity is now being confirmed also in the original WPI group. XMRV isn’t the only agent even in the WPI lab”.

http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/BloodProductsAdvisoryCommittee/ucm239304.htm

Rumour has it that Mikovits method of culturing and finding the virus was not used in the BWG studies. I have no evidence of this being true – it is just something I heard but surely protocols ought to be agreed and finalised before work commenced? Or perhaps it was the big red herring – designed specifically to fail, after all who needs another pandemic, right?
The question is, who is listening?

The press are lamenting the death of XMRV – but I believe this is premature. X stands for xenotropic. Tropism is a measure of the range of hosts that a mulv class gammaretrovirus can infect. Sometimes it can also indicate the type of cells such a virus infects.

MR means that the virus is very closely related to mulv class gammaretroviruses (murine related)

V is obviously virus

Therefore any mulv species of gammaretrovirus found replicating in humans could be an XMRV. We know of three different XMRVs detected in humans, and sequenced, apart from the XMRV isolated by Silverman.

We know that the vp62 XMRV clone synthesised by Dr Silverman is not related to the gammaretrovirus or viruses detected in the blood of ME patients by Drs Ruscetti, Mikovits, Lo, Atler and others.

Because xenotropic mulvs are now recognised to have the broadest host range of all, and are able to infect wild and lab mice, it is highly likely that the virus or viruses detected by Dr Ruscetti and Dr Mikovits will display a xenotropic host range and hence is an XMRV or, if more than one strain, XMRVs.

Don’t be fooled by the name game. The vp-62 sequence is synthetic, other XMRVs are anything but.

One XMRV may be dead but the others are very much “alive and kicking”.

The only fairly accurate piece of coverage in the UK was that by the BBC who mentioned that the outcome will be decided by the Lipkin study.

http://www.bbc.co.uk/news/health-15017660

http://news.sciencemag.org/scienceinsider/2011/09/insider-looking-out-how-people.html?rss=1&utm_source=twitterfeed&utm_medium=twitter

For better, for worse, for richer, for poorer, in sickness and in health.

These are the unofficial vows I made to my work when the Lombardi paper was first released, I promised I would stick by this story until the very end, no matter how dark times become.

Before 2009 I had never heard of the Whittemore’s, Frank Ruscetti, Dan Peterson, of Incline Village or of the many faces who have made the American political landscape of M.E what it is today.

But we know from Patricia Fero’s statement that the ‘ and Judy Mikovits have been toiling for many years with limited funds to provide for patients. Their journey has not been an easy one.

We also know from Mary Schweizer’s statements that Dan Peterson saved her life and has undertaken some groundbreaking work.

These key players have all parted ways from the Whittemore’s – with Peterson setting up his own research facility and Mikovits now being released from her contract at the WPI – where does that leave us? What research are the WPI now going to undertake without their leader at the helm? Without the universal support for Judy that the WPI rode on and a course of successful fundraising campaigns, can the WPI continue to flourish or will it founder? Only time will tell but I hope the WPI can open a new chapter and continue its work.

People are looking to blame the bad guy and of course the natural direction falls in the path of the WPI – whose shambolic question and answer session made out like they had something to hide,  more than seeking to clarify anxious patients – something I fear is down to shattered nerves and poor PR rather than the latter.

I don’t know what happened between Judy and the WPI. Talk of cell lines, mutters of a disagreement – does it really matter? I will never forget it was Judy who stood up at the NIH Workshop and said we cannot wait, we need CLINICAL TRIALS NOW. Judy who stood by the side of the fact that there was a humangammaretrovirus out there and would not let her research falter despite paper retractions and negative press. Judy was the Lions Heart of the WPI and without her, I cannot see it being the same but I am remaining optimistic after all nobody knows what goes on inside Oz, nobody can see the Man Behind the Curtain.

Judy’s work speaks for itself but is it fair to paint the WPI as the bad guys as we don’t have all the facts? I reserve judgement. There are those have vindicated Dan Peterson, Nancy Klimas and others and I would hate to see the same smear campaign being launched against the WPI.

I agree some form of transparency is needed, now more than ever. Patients deserve answers but we must in turn be patient ourselves.

There is a lot of fear and panic in the air, uncertain times lie ahead but we must pave our own yellow brick road through the terrain. Dr Mikovits will be picked up by another institute and continue her work, that I am sure of. Perhaps this is just what she needs to put a fresh approach into HRV’s.

It has been two years to the day since the release of the Lombardi et al XMRV paper in Science and the landscape of M.E changed forever, not because of the findings themselves, but because finally we had something to unite for.

Patients from Australia, America, Canada, Asia, Europe and beyond were uniting as one to be a part of the force for good and make a change to the suffering of affected M.E patients.

The course of XMRV was never going to be a smooth one but let us not be hasty to pass judgement.

 

Gabi Lewis

Neuroimmune Alliance

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5 Comments (+add yours?)

  1. Pat Keshen Mayer
    Oct 09, 2011 @ 16:42:28

    Bravo, Gabi!!!!

    Reply

  2. Rios
    Oct 09, 2011 @ 17:36:53

    WPI is not responding to patients regarding the validity of the VIPdx tests. They are sidestepping these questions. They are telling patients to contact VIPdx and when you call VIPdx guess who answers? UNEVX. They are telling patients that neither they or UNEVX are responsible for answering the questions. This is a mis-representation. If UNEVX is aswering the phone for VIPdx they should answer the question. All this is being done to confuse the patients that had their testing done at VIPdx. Why won’t they answer these patients who have paid for the testing? Call VIP at (775) 351-1890 and see who answers. Bye the way here is the info on who is the Director for both business entities:

    Marguerite Ross, Director
    Marketing & Client Relations
    VIP Dx

    Marguerite Ross, Director
    Marketing & Client Relations
    UNEVX Clinical Laboratory

    Reply

  3. Cathrine
    Oct 09, 2011 @ 17:46:20

    A wonderful blog-post. Thank you!

    Reply

  4. Chris Evans
    Oct 09, 2011 @ 18:46:02

    thanks gabi… clear an to the point… xx

    Reply

  5. Sarah Lawry
    Oct 09, 2011 @ 19:01:27

    Thank you Gabi for that summary of events of late. Harvey Alter said on 8th September at British Blood Transfusion Service annual conference in Glasgow that his study with Lo (2010), in terms of not exactly replicating methods of Lombardi (2009), had been “a mistake” and also that he was “mistaken” in his statement that his study with Lo fully validated Lombardi 2009. He also agreed that there had to date been no true attempt at replication of Lombardi 2009 – exactly two years ago today this study was published. Basic scientific protocol demands that the first step after novel retrovirus XMRV was found in 95% of 101 folk with ME would be a replication study.

    He stated in response to a question from someone else that he would not expect anti-retroviral drugs trials to be showing the success they clearly are if there were not a retrovirus at work in folk with ME.

    It seems the plethora of human gamma retroviruses that have come to light since October 2009 are hot property. There seems to be an unseemly and unscientific scramble to define this virus genetically, to patent assays and ultimately to profit. The methods used by the BWG were criticised from the start. I cannot think of any plausible explanation for not using WPI assays other than wanting the study to fail. The explanation used was that the WPI methods took too long.

    Meantime, we sufferers are ostensibly left to fend for ourselves, deprived of state benefit to which we are entitled, insurance claims denied, unable to get appropriate NHS tests and treatment or even a warm reception from our GPs. As Belgian ME expert Kenny de Meirleir has said – these are abuses of our human rights. No change there then. The only real change is that the ME community is wondering where/ who to donate funds to for biomedical research – specifically to further knowledge of HGRVs (certainly for me and I believe many others). Sufferers have always funded the biomedical research here in the UK.

    “These are the unofficial vows I made to my work when the Lombardi paper was first released, I promised I would stick by this story until the very end, no matter how dark times become.” – me too Gabi, only I have been aware of previous history and retroviral discoveries (eg Elaine de Freitas’ in late 80s). This is a cruel illness, both physically and politically.

    Regards, Sarah – 31 years ill

    Reply

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