"Neuroimmune Alliance" May 12 information leaflet

[Dx Revision Watch]

Yesterday, I noticed this document being promoted on the forum "People With ME". It's a PDF which has been prepared in the name of

http://neuroimmunealliance.org/


The document is entitled

"M.E. AWARENESS:

A GUIDE TO MYALGIC

ENCEPHALOMYELITIS"

and is being presented as an information leaflet suitable for May 12 to download, print out and to hand to the public.


http://www.neuroimmunealliance.org/resources/Neuroimmune Alliance booklet.pdf


On one page, immediately beneath

http://neuroimmunealliance.org/

are listed the following organizations:


Let's Do It for ME http://letsdoitforme.blogspot.com/

Invest in M.E. - www.investinme.org

The Tymes Trust - www.tymestrust.org

MCWPA - http://mcwpa.org

IAME [sic] - http://imeassoc.com/

------------

On page 5, it includes content around XMRV:

"2006: A group of American researchers at the Cleveland Clinic discovers a new human retrovirus in men with a virulent form of prostate cancer. They christen the retrovirus XMRV, which stands for xenotropic murine leukemia virus-related virus. There are only two other known human retroviruses: HIV and HTLV. XMRV is closely related to a mouse retrovirus. The last retrovirus to jump species was HIVfrom monkeys to humans.

"October 2009: A breakthrough discovery is made by scientists at the Whittemore Peterson Institute, Dr. Judy Mikovits and Vince Lombardi et al. discover the virus XMRV in 67% of CFS patients and 4% of healthy controls. Further testing reveals 95% of ME/CFS patients are infected.

"December 2009: The Japanese Red Cross issues a disconcerting report that XMRV has been detected in nearly 2% of Japans blood supply

"June 2010: American agencies Food and Drug Administration (FDA) and the National Institutes of Health (NIH) direct an XMRV study that seemingly finds XMRV in 80% of patients with ME/CFS.

"August 2010: The long awaited FDA/NIH Alter/Lo study published in PNAS confirmed 86% of ME/CFS patients were infected and 7% of healthy controls. Alter paper find not XMRV but MRV (Murine Leukemia Retrovirus). Now we know we have a family of Human Gamma Retro Viruses (HGRV's for short).

"September 2010: Pathogen hunter Dr Ian Lipkin is designated the role of undertaking an HGRV/XMRV study for the National Institutes of Health..."​

On Page 11...

"In 1991 a retrovirus was discovered in ME/CFS patients but the American authorities buried it. A retrovirus called XMRV was subsequently discovered in 2009 in 86% of M.E. patients and confirmed in August 2010 by another study. Dr. Judy Mikovits has stated that There is evidence of a human gamma retrovirus (HGRV) in the population.

"There were previously only 2 known human retroviruses: HTLV which causes T-Cell Lymphoma and T-Cell Leukaemia and HIV which causes AIDS. Now there is XMRV. The importance and severity of this finding cannot be overstated.

"Just as in AIDS the HIV retrovirus allows other infective agents to cause rare sarcomas, thrush infections, encephalitis and pneumonia, in M.E. the XMRV retrovirus may allow other infectious agents, usually held in check by a healthy immune system, to cause the symptoms of the disease we now know as Myalgic Encephalomylitis."​

----------

My questions are these:

1] Does the "Neuroimmune Alliance" comprise the organizations listed in the document immediately beneath its domain name, that is:


Let's Do It for ME http://letsdoitforme.blogspot.com/

Invest in M.E. - www.investinme.org

The Tymes Trust - www.tymestrust.org

MCWPA - http://mcwpa.org

IAME [sic] - http://imeassoc.com/


2] Is this leaflet published in the name of the five organizations above and have these five organizations read and approved the content of this document?

3] If the "Neuroimmune Alliance" does not comprise the organizations listed beneath its URL in this document, which organizations do comprise the "Neuroimmune Alliance"?

---------

I have scrutinised the website of http://www.neuroimmunealliance.org/

but no organizations appear to be listed as members of the "Alliance".

I note the following information near the top of a page around XMRV:


http://www.neuroimmunealliance.org/xmrv---the-story-so-far.php


[...]

"XMRV can be transmitted by something as simple as brushing teeth in a shared area or sharing a can of lemonade and this may explain why families sometimes have more than one member with CFS..."

 

[garcia]

Just to move this discussion along I'll try and answer:

My questions are these:

1] Does the "Neuroimmune Alliance" comprise the organizations listed in the document immediately beneath its domain name

No

2] Is this leaflet published in the name of the five organizations above and have these five organizations read and approved the content of this document?

Unlikely I would have thought.

3] If the "Neuroimmune Alliance" does not comprise the organizations listed beneath its URL in this document, which organizations do comprise the "Neuroimmune Alliance"?

No organizations as far as I am aware. I don't think "Neuroimmune Alliance" is an alliance of existing organizations.

 

[Firestormm]

This site is owned and maintained by Gabrielle Lewis.
Should you wish to contact us email at

info@neuroimmunealliance.org

Other than that, who knows?

 

[Dx Revision Watch]

Since this 12 page A5 booklet is being promoted as suitable for downloading, printing off and distributing to the public during ME Awareness Week and since there has been discussion of adapting its content for potential US distribution, I would suggest that the authors and promoters of this booklet consider the following:

This is a screenshot of two of the pages:

There is nothing that I can see within this document or on the website of the Neuroimmune Alliance, from where the PDF can also be downloaded, that clarifies whether the five organizations listed immediately beneath the Neuroimmune Alliance domain name (that is, Invest in ME, Tymes Trust, MCWPA and what I assume was meant to be the IMEA) are members of the Neuroimmune Alliance and endorsers of the booklet.


I would also suggest that when considering distributing materials to the public that distributers satisfy themselves that they understand and that it is clear from the materials in whose name the content is being published.

 

[garcia]

There is nothing that I can see within this document or on the website of the Neuroimmune Alliance, from where the PDF can also be downloaded, that clarifies whether the five organizations listed immediately beneath the Neuroimmune Alliance domain name (that is, Invest in ME, Tymes Trust, MCWPA and what I assume was meant to be the IMEA) are members of the Neuroimmune Alliance and endorsers of the booklet.

I would also suggest that when considering distributing materials to the public that distributers satisfy themselves that they understand and that it is clear from the materials in whose name the content is being published.

You might be better off contacting the person/people concerned rather than posting your suggestions here on a completely unrelated forum. Firestormm has given a contact email address.

 

[Dx Revision Watch]

"Jace" is involved in the production and promotion of this 12 page booklet that is being promoted for use during ME Awareness Week.

If Jace is reading this thread, could Jace clarify, please, whether the organizations listed under the Neuroimmune Alliance URL in the PDF
document are members of the Alliance and/or endorsers of the content of the document?


The Aims and Objectives of the Neuroimmune Alliance are set out thus:


http://www.neuroimmunealliance.org/

Aims and Objectives

Jace, are you able to tell us more about the "soon to be" patient clinic referred to on this page?

 

[Dx Revision Watch]

Garcia, why are you seemingly so discomforted about the raising of questions around a booklet being promoted for distribution during ME Awareness Week?

 

[garcia]

Garcia, why are you seemingly so discomforted about the raising of questions around a booklet being promoted for distribution during ME Awareness Week?

Not discomforted Suzy. Just think the questions would be better addressed directly to the people concerned. It would be far more efficient IMHO.

 

[Dx Revision Watch]

"Neuroimmune Alliance" claims a mandate to advocate on behalf of patients, this is its "Aims and Objectives"

http://www.neuroimmunealliance.org/

(there is more text beyond the image about a planned Patient Clinic)

why should discussion of a UK advocacy org and the documents it publishes not be considered a suitable topic for discussion or raising questions about on this forum?

 

[Dx Revision Watch]

Not discomforted Suzy. Just think the questions would be better addressed directly to the people concerned. It would be far more efficient IMHO.

Fair enough, but given past experience, I would not anticipate receiving a response. But since Jace has been involved in the document and is an active poster, here, perhaps Jace will clarify.

 

[Uno]

Fair enough, but given past experience, I would not anticipate receiving a response. But since Jace has been involved in the document and is an active poster, here, perhaps Jace will clarify.

Suzy

Those organisations are not affiliated with Neuroimmune Alliance, it was meant to read "recommended organisations" above but we missed it out. Schoolboy error and will correct now I've realised.

Thanks for pointing it out.

Yes there will be a patient clinic, I am trying to find a lead doctor as the one I want to use is tied up until 2013 but until then there will be monthly support meetings and talks.

 

[Dx Revision Watch]

Suzy

Those organisations are not affiliated with Neuroimmune Alliance, it was meant to read "recommended organisations" above but we missed it out. Schoolboy error and will correct now I've realised.

Thanks for pointing it out.

Yes there will be a patient clinic, I am trying to find a lead doctor as the one I want to use is tied up until 2013 but until then there will be monthly support meetings and talks.

Thank you for the clarification.

I note on your site you state:

"XMRV can be transmitted by something as simple as brushing teeth in a shared area or sharing a can of lemonade and this may explain why families sometimes have more than one member with CFS..."

On what research does your organization rely for that statement?

Thanks.

Suzy