• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Mikovits radio interview Oct 7: XMRV, WPI, accusation of theft etc

waiting

Senior Member
Messages
463
Oh, I see what you mean... It's last week's episode with Dr. Rick Sponaugle.

I don't know what's going on.
Yeah, me either. I can't find it, so I'm just going to have to wait until it's archived I guess. It's 22 minutes in now anyway.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Posted on International ME Association's facebook page:

Dr. Mikovits' radio show has been changed to Nov. 4th, 4-6 PM PT

Please note Dr. Mikovits will be on this radio internet show Nov. 4 instead of tonight.

Radio Show: In Short Order -- Dr. Judy Mikovits

Thank you for all of the Dr. Judy questions. Due to illness, Dr. Mikovits has rescheduled her interview for November 4, 2012. Please keep sending your questions to <peerobmagazine@aol.com> as they will be addressed.

Remember that Dr. Mikovits will be at the 2013 Physician's Round Table conference.

https://www.facebook.com/permalink.php?story_fbid=479132878785412&id=191236810908355
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)

Enid

Senior Member
Messages
3,309
Location
UK
Thanks Bob, something I'd much like to keep up with. Out of action yesterday, do you think it might be available somewhere still without too much effort on your part.
 

Enid

Senior Member
Messages
3,309
Location
UK
Not listened to whole yet - thanks Nielk - but the ongoing researches are so encouraging. Always thought so highly of Dr Mikovits - so glad she is in the thick of it still and even more so now.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
So.... it is worth me listening to this 2 hour interview or not? Only there seems to have been very little reaction to what she had to say. Thanks.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Here are some really good notes, by Maxine Smith, that have been posted on facebook. Permission to share.

NOTES ON DR MIKOVITS RADIO INTERVIEW

http://www.blogtalkradio.com/in-short-order/2012/11/04/in-short-order--dr-judy-mikovits

Dr Judy Mikovits, interviewed by Sue Vogan on November 4th, 2012, on www.blogtalkradio.com show entitled “In Short Order”

First of all, if you haven’t seen Katherine Stevens’ very helpful notes on the interview, you can see them here: https://www.facebook.com/notes/kath...ikovits-radio-show-nov-4-2012/234647553240244

Here are some additional points made in the interview:

RECURRING THEMES:
I think most important are the parts that Dr M said over and over and over:

1) Human Endogenous Retroviruses (HERV’s) can be expressed/resurrected in immune compromised patients, and these are associated with:
- Infection
- Auto-immunity
- Cancer
(Sound familiar?)

2_ Cross-reactivity of antibodies in 6% of Lombardi [this should say Lipkin] controls, and in retroviral seropositive neuro-immune patients (eg. ME) may become a biomarker for neuro-immune disease

3) XMRV opened the door to a new (and frightening) frontier in retrovirology. Now it is known that retroviruses can:
- Spread through the air (and contaminate labs) like mycoplasma
- Remain on hard surfaces for 3 days AFTER BLEACH (scary, because apparently bleach kills HIV)

4) Dr Mikovits (and team) are still looking for a pathogen in ME, INCLUDING retroviruses.

OTHER POINTS:

- Dr Mikovits spoke of Canadian researcher Marion Ledru (Le Droux? Le Duc?), who has noted that ERV’s can be expressed in immunocompromised patients.
- Another researcher, George Young has also found that ERV’s can be resurrected in immune compromised patients, and these are associated with the key trinity (also found in M.E., as noted by Dr M):
o Infection
o Auto-immunity
o Cancer (Dr Mikovits noted Dr Peterson’s cohort of M.E. patients with rare lymphomas)
- KEY POINT: Human Endogenous Retroviruses (HERV’s) COULD BE A MARKER FOR “CFS”!! (Please don’t nudge me for using “CFS” – just reporting what was said; and see Dr M’s later comments about nomenclature, below)
- Dr M talked about another trinity found in M.E. patients:
o Lymphadenopathy
o Splenomegaly
o Viral onset
- I understand this triad was also used in identifying Lipkin cohort
- Understanding the positive findings in a small % of controls, and in all the positive M.E. patients from Lombardi:
o Dr Mikovits posited that the GAG found in positives could have been ERV’s, expressed in immune compromised M.E. patients
- A key gem from the Lombardi paper: XMRV CAN SPREAD THROUGH AIR AND REMAIN ON (BLEACHED) SURFACES FOR DAYS. This is a monumental finding, and as Dr Mikovits inferred throughout the interview, a real game-changer. HIV is destroyed by bleach. In XMRV, we are facing a new kind of transmission – not unlike mycoplasma – which can be transmitted through air. It is paramount to understand that retroviruses had never been known to spread through air like mycoplasma before. This could have huge implications for future retroviral research and public health management.
- Antibody cross-reactive positives from the Lombardi paper. Important to note that they did NOT isolate virus from any of these patients.
- Antibody positive does NOT necessarily prove the presence of a retrovirus
o Cross-reactivity possible
o Could be an abnormal auto-antigen (molecular mimicry)
o If an auto-antigen, these patients then have a defined auto-immunity. This puts CFS under the umbrella with RA, MS, etc, so that ME might be treated by drugs for auto-immunity
- NB: Frank Ruscetti and Dr Mikovits ARE still looking for a retrovirus in ME/CFS
- Re Antiretrovirals (ARV’s) – are they appropriate in ME/CFS? Mikovits gave examples of 1) HTLV, isolated by Ruscetti
o Causes T-cell leukemia
o Treated by AZT – some but not all are responsive but NOT by viral load. Most ARV’s are “chain terminators”, which stop RNA viruses
o They are still working with Dr Snyderman and Deckoff-Jones
- RNAse-L degrades RNA, and ARV chain terminators stop transcription
- ARV’s can also affect proteases
- MicroRNA’s regulate genes and can cause aberrant signaling in cancers
- Sjogren’s is also an auto-immune disease. AZT has been beneficial in that disease too. In Sjogren’s there are also cross-reactive antibodies to HTLV antigen proteins. But stopping abnormal transcription of endogenous reactivated viruses is key in therapy.
- Damage (disease) can be caused even with a non-replication-competent virus
- Therapeutic aim is to stop abnormal cell signaling
- Another example: MS patients. They are interferon-responsive. There is evidence of pieces & parts f infection.
- Now there is another avenue of therapy to be explored for ME/CFS
- KEY POINT REPEATED: Cross-recativity with retrovirus antibodies could be a new biomarker for neuro-immune disease.
- The positive antibody tests in Lombardi – they were possibly detecting HERV’s.
- Thoughtful postulate by Dr M: what is that 6% reactivity (in the normal controls) in Lombardi?
o Abnormal cellular proteins?
o Another virus?
o Endogenous virus cross-reactivity?
What type of retroviral involvement is there in ME/CFS? DR M QUOTE: “We don’t have any data beyond footprints (of retroviruses)”, such as:
- Antibody response
- Chemo/cytokine signature
- Dr M is working on this question with Dr Andy Mason (U of Alberta), Dr Lipkin, Dr F. Ruscetti, etc.
ME patients have NK cell defects. NK cells:
- Kill virus
- Kill tumor cells
Dr M and Lipkin are using Next Generation Sequencing to look for potential pathogens
- Asked about the UK study – “The results ARE invalid”.
- KEY POINT: We could not have known before (Zhang?) paper (2012?) that XMRV could pass through air and exist on surfaces AFTER bleach.
- BUT Serology positives are biomarkers that these patients may have an auto-immune disease.
- Asked about persecution in early days of AIDS – Dr M does NOT see comparative persecution by government. In fact, Dr M said that government support ALLOWED her XMRV & retroviral research in CFS to continue. Important to recognize that the US government put millions of $ into clarifying the result of ME/CFS research re XMRV.
- Another positive outcome: “Private investors like the Hutchins Foundation investing in the CFS”.
- Quote: “XMRV is NOT about the mice”.
- Evidence for a retrovirus in ME
o Remains a definite possibility
o Doing nexgen sequencing
o Cytokine/& chemokine profiles
o Viral microarrays
- Question from Dr Patel: What was the primary reason for the Lombardi retraction?
- Answer: Dr Mikovits agreed to PARTIAL retraction of Figure 1. The sequence of the virus was not XMRV. But as shown, plasma contamination was not in her sample
o Evidence of viral antigen from unmanipulated blood samples (i.e. they hadn’t been opened until the testing)
o Evidence of GAG sequences
o Re: Culturing with Cibitidine – saw expression in one study, not the 2nd, so this is a red herring
o Mikovits’ culturing was completely blinded
- QUOTE: “The failure of others to replicate our work was WHY we did the Lipkin study”
- Nomenclature – she used “CFS” in XMRV paper, hence also in the replication Lipkin study.
- Recommends ICC for future work.
- Re: controversy, hate mail to Drs Mikovits, Lipkin, Ruscette. Dr Mikovits’ response: “Embrace us”. “We need to pull together and work”.
- Mistakes – lessons, “That’s how you move forward in science”. “I don’t agree with the retraction”: There are many other papers finding viruses in cancer that were not retracted. We learned from them – why retract them?

PEARLS FROM THE XMRV STUDY:
- Serology results
- GAG sequences found
- Immune precipitation of proteins in unmanipulated tissue (i.e. test tube hadn’t been opened ever, after collection, until the precip of proteins)
- The XMRV retrovirus spreads better than ANY OTHER KNOWN RETROVIRUS: HUGE implications for public health in future.
o Air transmission
o Survive 3 days AFTER bleach

She is now working with F. Ruscetti on a neuro-immune audience (eg. funding?)
LNCAp – best cell line from harvesting retroviruses
Nexgen sequencing may be the most promising avenue of enquiry in ME

INTERVIEWER: Took a moment to explicitly applaud the scientific caliber of questions. Noted that in all her years, these were the best questions she had fielded. (Note from ME patient: you just need a desperate population, neglected for decades – we have no choice BUT to become somewhat literate in the science)

ME/CFS characterized by:
- Multiple infections
- Defect in innate immune system
- “IMO, I see this as an Acquired Immune Deficiency:
- Poor response to pathogens – eg. EBV
- Genetic susceptibility
- QUOTE: “You should consider this (ME) as a “Non-HIV AIDS”
- QUOTE: “ This is not about being tired. It is a crippling disease”

Important to note:
- Only 5% of patients that get HTLV get the disease. You can have HIV and not have AIDS
- So... what are the epigenetic susceptibilities?
- Eg. in Nevada there is high arsenic in the H20 (a demethylator)
- Could environmental organophosphates, arsenic, coinfections, mycoplasma, be triggers for ME?
- If so, it’s (ME is) still an Acquired Immune Deficiency.

Re: 22RV1: “We never did have 22RV1 in our lab, during science paper, but they received it in the lab during the Lipkin paper.”
Mikovits doesn’t know how contamination happened.
- NTF used as a test in Chronic Lyme – may be a marker of susceptibility.
- QUESTION: If GAG sequences found were HERV’s expressed in Lombardi study, was the Lipkin cohort comparable? Mikovits supports the Lipkin cohort. Also spoke about excluding thyroid involvement. They simply did that, because it was done in Lombardi, and this was a replication. She acknowledges thyroid involvement can be part of ME.

REPEAT OF KEY LEARNING FROM LOMBARDI: “We learned that retroviruses CAN spread like mycoplasma”

Update on Lyme conference: “Very interesting... here is another disease that according to the government doesn’t exist”.

On: “Would it help to do tissue testing?”. Dr Mikovits suggested that tissue testing would only be done very judiciously in ME. Would it be viable to do tissue testing? - might provide valuable resources.

Dr Mikovits asked: Did ME start 30 years ago, and now we have 900K – 1M people (US)?
Dr Mikovits believes estimates (current epidemiology of ME) is only the “Tip of the iceberg”. She points to overlapping neuro-immune syndromes:
- Lyme
- FM
- CFS
- ME
- Lymphomas
- Autism
Is ME the only disease caused by this putative pathogen? She clearly suspects not. “Hard to (unintelligible) an agent, if you don’t know what the agent is”
- Mikovits believes the thyroid may be the reservoir for M.E.
- Dr Mikovits will be at the 2013 Physician’s Round Table in Tampa
- Dr M going back to Ireland with Dr Enlander

Re finding of GAG sequences: Interesting that Dr M found MORE GAG sequences with delayed processing of samples.

Mycoplasma, EBV still an etiologic possibility in ME

For more info or questions: www.suevogan.org ; www.peerobmagazine@aol.com