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General Discussion / Re: I knew it had to be
« Last post by cath on Today at 06:37:06 AM »
Vary scary Cath...

Sorry I scared you. it does not scare me. The measures the EU took, lowered infection pressure a lot.

I am following the liturature for almost 30 years now  I learned a lot of it.
 



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While we are revisiting—let’s go back to the **press conference/s held by Dr. Ian Lipkin with the results of the XMRV study re ME/CFS – **September 2012.

Sooo, backtracking to the press conference dated September 18, 2012—there were actually TWO different press conferences viewed by many of us at that time.   OOPs where did that ‘other one’ go?  Disappeared from cyberspace .  .  .  Curious and curiouser!


http://www.youtube.com/watch?v=WRYNnCdLsQ0
This is the link (above) to the Lipkin press conference that can still be accessed.

Please pay close attention and take note of what Dr. Lipkin says starting around the 3:20 mark—*quoted below— and linked at http://www.mecfsforums.com/wiki/Multicenter_Study_of_CFS/ME

This transcript was prepared for MECFSForums by Patricia Carter. If you quote it anywhere else, please cite your source as MECFSForums and give a link to this page.

CII Press Conference, 9/18/2012
Multicenter Study on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
LIPKIN:


Quote
*Subsequent publication from many, but not all, groups that looked into the question of whether or not these viruses could be associated with these disorders, for the most part, failed to replicate those findings. Nonetheless, none of those studies had the power to, you know, the power to incontrovertibly refute the association between those viruses and the disease. Furthermore, they did not offer the investigators who had done that initial work an opportunity to use their best methods in sorting out the challenge.
________________________

NOW—hold that thought—
Quote
“Nonetheless, none of those studies had the power to, you know, the power to incontrovertibly refute the association between those viruses and the disease.”
 

Add to Dr. Lipkin’s quoted statement above—another quote from ‘the other’ press conference—which—has been pulled from public access

In this ‘other’  ‘disappeared’ presentation at a press conference, Dr. Lipkin BEGAN with this statement .   .   .

Quote
Until this latest study--no one has had the resources to refute the Retrovirus XMRV theory .   .   . “

And subsequently access to that press conference disappeared from the web.

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

So what do these two statements say??

Quote
“Nonetheless, none of those studies had the power to, you know, the power to incontrovertibly refute the association between those viruses and the disease.”

Quote
“Until this latest study--no one has had the resources to refute the Retrovirus XMRV theory .   .   .

These two statements scream out that the infamous Retrovirus XMVR study that Dr. Lipkin was hired to carry out by HHS/NIH had an 'underlying' MANDATE.  That mandate was to REFUTE the XMRV theory with regard to ME/CFS.


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

Excerpts from the Question / Answer—Lipkin answers Q from NSIKAN—Q from The Post

Quote
So at a time when people were saying this was a psychosomatic disorder, I said two-thirds to three-quarters of the individuals whom we’ve studied have polyclonal B-cell activation. They’re sick. We don’t know why. But they’re sick. So that’s really the take home point.

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

HILLARY JOHNSON:

Quote
The origination of the discovery of XMRV was by, as you know, Joe DeRisi and Ganem re: CFS. Also, there were a number of papers published in 2008, 2009, on relating XMRV to prostate cancer as well. The … or associating it, not saying it was the cause, obvious, but … nor did your paper, Mikovits and Ruscetti’s paper say that it was the cause either, by the way. But I guess my question, basically, is why so much emphasis, so much urgency to retract the connection between XMRV and Chronic Fatigue Syndrome and there haven’t been any calls for the retraction of the prostate cancer papers that … where prostate cancer and XMRV were associated. Just curious.

LIPKIN:

Quote
So I think that’s a… it’s an interesting question. I don’t see any delicate way for us to it and it’s somewhat off point, so…I’ll be happy to talk with you about that offline, but not online.
---------------------------------

Last question. Hillary.

JOHNSON:


Quote
I’ll keep this short, but I’m trying to focus on what were the good things that came from this work. And we’ve seen that XMRV is a chimera, as has been described, And isn’t this worrisome in that, you know, we’ve seen how rapidly XMRV can replicate in human cells, we saw what XMRV did in the rhesus macaques, and we are still using MLV in gamma retrovirus research in creating recombinants and vaccine therapy. Has this experience caused people at NIH, maybe you could speak to this, Dr. Ruscetti—has this caused people at NIH to be somewhat concerned and even alarmed about the fact that these recombinants can occur in the lab, that there could be manmade chimera/viruses?

LIPKIN: (You can see Lipkin's response in the full article linked above.)

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

CONCLUSION

Where we are in terms of ‘the commitment of scientists around the world solving this problem,’ i.e. the answers to ME/CFS?  Let’s refer back to Dr. Ian Lipkin’s statement from the press conference:

Quote
Now, many in the community have written me over the past 12 hours since there have been leaks about the press release and the findings of the paper, with dismay, with concern that this meant the end of CFS/ME research. Nothing could be further from the truth. Everyone here at this podium, scientists around the world, are committed to solving this problem. It is likely to be a constellation of disorders, not necessarily a single agent, be it viral, bacterial or otherwise.

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

Sooo—WHAT happened?

By the fall of 2013—IOM / P2P ‘jury model panel’ is rammed in by HHS to be decreed law of the land for ME/CFS—despite being strongly OBJECTED to and warned against in an unprecedented action by dozens of International ME/CFS Experts and Researchers.

There is NO HHS BIO research going onthe answer to being ‘committed to solving this problem’—i.e. ME/CFS – is to bury ME/CFS by the actions of the IOM committee and P2P jury model—
‘set up’ by the HHS-NIH.


Obvious QuestionsWHY, for 30 years is HHS so set on refuting discovery/ies re ME/CFS? i.e., BIO discoveries that would lead to REAL treatment/BIO treatment for the MILLIONS of us ‘locked away’ with ME/CFS.

And, WHY is HHS so desperate now to invoke and railroad in the BOGUS IOM and P2P on ME/CFS--AGAINST the advice of the ME/CFS Experts and Researchers?

There are a LOT of UNanswered questions .    .    .  as well as BIZARRE actions and INactions by the HHS-NIH-CDC--gross negligence to the ME/CFS community and spread of the PLAGUE ME/CFS.

Curious and curiouser. ??? ??? ???

(my bolding in the quotes)
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General Discussion / Re: I knew it had to be
« Last post by JT1024 on Today at 03:32:25 AM »
Vary scary Cath...

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http://thedamnchronicsituation.blogspot.ie/2014/07/mindfulness.html

     THE WHOLE DAMN CHRONIC SITUATION    A life with Chronic Fatigue Syndrome.


                                 Tuesday, July 22, 2014   

MINDFULNESS

Quote

    To me, the philosophy behind Mindfulness, is one of the only ones I have ever heard that makes real sense to me. 

  Mindfulness, as more and more people are discovering, is a way of looking at the world that focuses on the present moment. The idea is that the present is the only thing that really exists.


More:  http://thedamnchronicsituation.blogspot.ie/2014/07/mindfulness.html
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http://www.ucl.ac.uk/news/news-articles/0714/220714-Gene-variant-for-mental-health

 Gene variant linked to schizophrenia, bipolar disorder and alcoholism 


22 July 2014


  Depression height=300

A rare gene variant discovered by UCL scientists is associated with an increased risk of developing schizophrenia, bipolar disorder and alcoholism, confirms new research.

People with the variant are around 2 to 3 times more likely to develop schizophrenia or alcohol dependence, reports a new UCL study.

The variant, which is found in approximately one in every 200 people, is also associated with a threefold risk of developing bipolar disorder, as previously shown by the same UCL group.

The research, published in Psychiatric Genetics, is based on genetic analysis of 4,971 people diagnosed with one of the three disorders compared with 1,309 healthy controls. It found that people with the variant of the GRM3 gene, thought to be important in brain signalling, were at increased risk of developing bipolar disorder, schizophrenia and alcohol dependence.

 GRM3’s association with schizophrenia was also confirmed by a global study involving a consortium of over 200 institutions including UCL. The research, published in Nature, involved searching the genomes of 36,989 people with schizophrenia and 113,075 healthy subjects from across the world. 108 different genetic locations were found to be associated with the disease, but GRM3 is the only one for which a specific mutation responsible has been identified.

 “We could be looking at the next big drug target for treating mental illness,” says Professor David Curtis (UCL Psychiatry), co-author on both papers. “The work opens up new ways to prevent and treat mental illnesses by revealing the mechanisms involved in their development. The result for GRM3 from the consortium is particularly compelling, as the odds of this occurring by chance are only one in a billion.”

Quote
We could be looking at the next big drug target for treating mental illness
Professor David Curtis

   At present, schizophrenia is treated with drugs that reduce the activity of the chemical dopamine. Dopamine is important for transmitting messages between brain cells, but over-active dopamine signalling may cause parts of the brain that are supposed to be separate to communicate with each other. For example, some scientists suspect that such signalling between the speech and hearing centres of the brain may explain why people with schizophrenia ‘hear voices’.

 Yet dopamine is not the only chemical that brain cells use to communicate with each other. Glutamate is also involved and GRM3 codes for a protein which brain cells use to detect glutamate. Brain cell activation is controlled by calcium ‘channels’. The latest research implicates both glutamate transmission and calcium channels in schizophrenia development.

 “Drug treatments for schizophrenia have barely changed over the past few decades, as they still target dopamine receptors,” says study co-author Dr Andrew McQuillin, head of the UCL Molecular Psychiatry team that first discovered GRM3. “Schizophrenia treatments targeting glutamate receptors have been tested in the past without success. However, they might be more effective at treating patient groups with mutations in glutamate receptors such as GRM3.

 “Drugs targeting calcium channels have been tested against bipolar disorder with some success, although only in open-label trials and not double-blind clinical trials. The results should therefore be interpreted with caution, although the Nature paper findings do suggest that calcium channels are a viable drug target. Overall I expect we will see increased interest in drugs against both glutamate receptors and calcium channels as a result of the research.”
 

Links Images
  • Depression (credit: Michael Summers, source: Flickr)
  Media contact Harry Dayantis: Tel: +44(0)20 3108 3844
Email: h.dayantis [at] ucl.ac.uk
   
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http://www.bbc.com/news/uk-england-28444626

 23 July 2014 Last updated at 11:50 ET
 
 ME woman Beth French swims 26 miles to Scilly



Beth French could not use flippers, a wetsuit or drysuit in the challenge

A woman who was once forced to use a wheelchair because of Chronic Fatigue Syndrome (CFS), or ME, has swum 26 miles from Cornwall to the Isles of Scilly.
Beth French, 36, who had the condition as a teenager, made the crossing in 17 hours, 28 minutes.
The massage therapist from Milverton, Somerset, is believed to be the first person to complete the swim in that direction.
Now she is planning a swim from Gibraltar to Morocco.
Beth French said she was stung all over her body by jellyfish

Ms French was struck with glandular fever at the age of 10 and diagnosed with ME at 17, when she was forced to use a wheelchair.

After swimming the English Channel in 2012, she went on to complete a 24-hour swim in the Molokai Channel in Hawaii in December 2012.

Speaking after her latest achievement, Ms French said: "I was determined to finish, there was no question of not achieving it.

"I was absolutely gobsmacked when I heard the time, I had expected to do it in 20 hours."
   

Chronic Fatigue Syndrome
  • Chronic Fatigue Syndrome or ME (Myalgic Encephalopathy)is a debilitating condition involving severe fatigue, painful muscles and joints, gastric complaints and poor memory and concentration
  • It can leave patients bed-ridden in severe cases.
  • Up to a quarter of a million people suffer from the disorder in the UK.
       Ms French was observing English Channel rules during the swim, meaning she could not use flippers, a wetsuit or drysuit.

"There was an awful lot of jellyfish," she said. "They stung regularly but not badly. After a while, I managed to ignore them.

"There's not an inch of my body that hasn't been stung."
An estimated 250,000 people in the UK suffer from Chronic Fatigue Syndrome
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Another thing where it makes sense,

There were cluster breakouts in many hospitals.

In the 80's and early 90's, every hospital in NYC there were clusters.

Labs are in all of those hospitals, they are big teaching hospitals, and research goes on at all of those hospitals.

That article says HIV somewhere in it and  70's, think about that.......
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Yes and since that article says this has been going on with cell lines since the 70's, we have to wonder how many cell lines over the years have been infected with murine gammaretroviruses, and what were all those cell lines used for? We know the gammas are used in many area's cancer, biologicals and others. And given the other recent papers showing XMRV was in other cell lines and had the potential to  infect lab workers shows that it got into those cell line via horizontal transmission, which means it's airborne!  And apparently so are the other mlv's they are finding to be present in cell lines.  And they've also put out a recent paper that said recombination could happen (and produce a pathogenic retrovirus) both in the labs and inside the cell lines. And also that the recombination could happen according to the IOM and FDA's current information, even once put into the human body. That's why they monitor anyone receiving animal organs, tissue or cells for life, and their "close" contacts are deferred from giving blood. Didn't take much to figure out what this all means and is currently written up on their FDA site.  And that is there is and has always been the possibility for these processes to create a public health safety problem.  And it could have gone undected for decades because there was no testing for the new pathogen/s that could have been created.
(my bolding)

Hmmm .   .   . Public Health Safety Problem/s.  IOM / P2P jury model panel (don'tcha love that one!!)  --  Hmmm  .   .   .  RAMMED in by the HHS to HIDE WHAT? Wellllll--since IOM is currently 'set to' redefine ME/CFS into evaporation molecules--seems they are concerned about HIDING one or more 'public health safety problems' that they don't want to admit to!

Me thinks they doth protest too much and put up roadblock after roadblock--for 30 years--NOT seriously looking into the BIO reasons for ME/CFS--RATHER--HHS is hell-bent on burying this disease of ME/CFS  and  Gulf War Illness, for example!  Even as the disease/s SPREAD .  .  .  PLAGUE!

Ohhh, yes, there are extremely dedicated and brilliant ME/CFS Experts and Researchers out there -- and like us--the patients--they are blocked all along the way as they strive to make REAL progress!!  It doesn't take rocket science to see this 'transparency' 'hidden--behind closed doors' .   .   . We are very sick--but we ain't lacking in intelligence.  And by the way--we ain't crazzzy either--the plug has been pulled on that one!!!!!!!  ;)

They is STILL up to NO gooood!  Ain't foolin' anyone!!  Tsk, tsk .  .  .   ;) ;) ;)

New pathogens on the loose -- ME/CFS .  .  . GWI .  .  .  tip of the iceberg.
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And yes this is a very interesting part for the article. Also interesting that John Coffin was able to produce Replication Competent Retroviruses out PreXMRV 1 and PreXMRV 2 which is XMRV, when he recombined it with a human kidney cell line.  And it produced RCR's in only 10 days!  This from the article:

Murine Endogenous Retroviruses in Human Cancer Cell Lines

The lesson of XMRV is a potentially important one. The fact that XMRV arose from xenotransplantation (i.e., xenografting) of CWR22Rv1 through mice– a very common practice when developing cancer cell lines – is particularly concerning. Although most researchers appear to be unaware of the potential contamination threat (Zhang et al., 2011), the infection of xenografted human cell lines with xenotropic retroviruses is well-established in the literature, dating back to the early 1970s (Takeuchi et al., 2008; Sfanos et al., 2011). In 1972, an endogenous feline retrovirus, RD114, was found to have infected human rhabdomyosarcoma cells that had been xenotransplanted through a fetal kitten brain (McAllister et al., 1972). In 1973, there was a similar finding in that a murine type-C retrovirus was isolated from rhabdomyosarcoma cells that had been xenotransplanted through NIH Swiss mice (Todaro et al., 1973). However, the implications of these and other findings have arguably not been fully realized. To date, and particularly after the XMRV controversy, several additional reports highlight the widespread issue of xenotropic MLV (XMLV) contamination of xenotransplanted cell lines (Table 1).
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Yes and since that article says this has been going on with cell lines since the 70's, we have to wonder how many cell lines over the years have been infected with murine gammaretroviruses, and what were all those cell lines used for? We know the gammas are used in many area's cancer, biologicals and others. And given the other recent papers showing XMRV was in other cell lines and had the potential to  infect lab workers shows that it got into those cell line via horizontal transmission, which means it's airborne!  And apparently so are the other mlv's they are finding to be present in cell lines.  And they've also put out a recent paper that said recombination could happen (and produce a pathogenic retrovirus) both in the labs and inside the cell lines. And also that the recombination could happen according to the IOM and FDA's current information, even once put into the human body. That's why they monitor anyone receiving animal organs, tissue or cells for life, and their "close" contacts are deferred from giving blood. Didn't take much to figure out what this all means and is currently written up on their FDA site.  And that is there is and has always been the possibility for these processes to create a public health safety problem.  And it could have gone undected for decades because there was no testing for the new pathogen/s that could have been created.
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