What the FDA/NIH study means to us... my personal take on the situation...

What the FDA/NIH study means to us... my personal take on the situation...

Hi everyone,

It seems to me that this news has sent our world into a bit of a spin... it has mine anyway...
The results of the study weren't quite what we were expecting, and we are not quite sure what to make of it...
We were expecting an XMRV confirmation study, but there wasn't any XMRV...
We'd pinned much hope onto XMRV, and from the one study that we were expecting to validate the WPI study, there just wasn't any XMRV to be seen!

So what does this news mean for us all?

I think it is all great news for us.
Alter and co, have confirmed that ME/CFS patients are infected with a newly discovered variety of closely related Human Gamma Retroviruses.
This is big news.
No one is going to dismiss Harvey Alter's work like they did with the WPI's work.
No one is going to be able to publish any zero/zero studies now, without severe embarrassment, and they would be ignored by the scientific community if they did.

I think that whether the wider ME patient population is infected with XMRV or other MLV-related viruses, or both, is obviously a detail that needs to be resolved... but we now know that ME/CFS patients are infected with a new variety of very similar Human Gamma Retroviruses... confirmed in two studies with different patient groups from geographically diverse areas, using different diagnostic criteria.

Everything seems to fit into place.

Retroviruses are highly disruptive and an infection with a retrovirus would explain all of our symptoms.

Those patients who have so far tested negative for XMRV, might test positive for these other MLV-related viruses.

I think it is still early days in this research, and I'm sure that Alter and Mikovits will work together to better understand these new MLV-related viruses that they have both found.
I think that there is no doubt that our friend, Judy Mikovits, is working furiously on this right now.
Actually, I'm sure that she's already been working on these new MLV-related viruses for months.
Alter took his small set of samples almost entirely from the New England Area, so maybe geographical differences, and the small number of samples, explains why he did not find XMRV.

There seems to be such a lot of work going on behind the scenes that we are not allowed to know about, some of which Judy Mikovits has hinted at.
For example:
The WPI have now found different variants of XMRV;
The WPI have now done very significant research which links XMRV with immune irregularities, to be published at the end of the year;
Anti-viral drug testing trials are being planned, or have started;
And (news from Amy Dockser Marcus' Wall Street Journal blog) Judy Mikovits is now finding polytropic MLV-related viruses, like Alter's, in her original Science paper samples (i.e. she is finding both xenotropic and polytropic MLV-related viruses in individual patients).

But in the months since then, they have continued to study the CFS patients included in the Science paper and Mikovits says that almost all of them are positive for one or more MLV-related viruses, including X and P.

Alter seems to be supporting CFS 100%. He knows more than we do, partly because of his communications with the WPI, and he has not backed down from Human Gamma Retroviruses and their association with CFS/ME... He seems to be backing CFS all the way.

Although there's still many questions to be answered at this point in time... to me, this seems like a very optimistic time for our community and, I think, the turning point... The point of no return, in terms of scientific research.

Now we sit and watch all the funding come flooding in, all the top virologists get involved, and wait for all the ongoing studies (on HGRVs in CFS patients) to be published.

Right now, I think there's very good reason for CFS/ME patients to be hopeful.

Here's some info from the published FDA/NIH paper which I think is worth emphasising:

Of the 25 CFS patients who had been rigorously evaluated at the academic medical center, 24 (96%) were positive.
So, of the patients who had been 'rigorously evaluated', to confirm that they had ME/CFS, using the diagnostic criteria that the study employed, 96% tested positive.
96% is almost identical to the final WPI figure for their cohort of 97%... It's effectively a 100% result, which I think is an astonishing result.

The other patient samples in the study were from patients who were diagnosed by their Doctors, and these patients were not rigorously evaluated for ME/CFS by the research team.

The other 12 samples from CFS patients were sent by individual clinicians taking care of patients in the mid-1990's who were given the diagnosis of CFS. We do not have details regarding the methodology by which the referring clinicians established the diagnosis of CFS.


Thanks so much for this crisp, easy to read summary, Bob. Your synthesis of all this data is like the Cliff's Notes version of War and Peace--- and I for one really appreciate it. Yes, in my view you are spot on- everything does seem to be starting to fit into place, and this is good news for us.
Hi Cloud, yes, I agree with everything you say there. You seem to understand the science very well. This new study does validate the WPI Science study, and a single type of retrovirus (with variations) has been associated with ME/CFS patients, in a very high percentage of samples tested. Now we need more studies, and I imagine that there will be much more money available and many more scientists eager to get involved now that Harvey Alter has confirmed this new type of virus. I don't think any scientist with any credibility is going to publicly dismiss Harvey Alter's work, like some have tried to with the WPI's work.

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