February 2010

Posted by Cort Johnson


A small Dutch study found zero evidence of XMRV in chronic fatigue syndrome patients. In some ways it was the weakest study of the bunch; it used quite old samples and a watered down criteria but it did use the same primers and a similar amount of nucleic acid as the original study. They searched for sequences on two of the viruses three genes. While not a replication attempt an editorial accompanying paper nevertheless asserted that the methods should have been sufficient to detect the virus if it was there -something that analyses by the ME Association and the CFIDS Association appeared to agree with.… Read More

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Written by Kelvin Lord

1475-cheer_up.jpgBy Kelvin Lord Treatment #10

Of all the things we have to deal with internally fighting this hideous disease, to me, the things that we fight externally are sometimes more debilitating.

This week I came face to face with one of the biggest enemies to recovery, the ignorance and insensitivity of other people. In my case, this shocking reminder of just how alone I really am in this battle came in the form of reminders from the two groups in my life where I least expected it – the medical professionals treating me, and from certain family members who really do love me.… Read More

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Posted by Cort Johnson

Written by FernRhizome

1418-XMRVProstate.jpgCheney/Mikovits – February 20, 2010
Part III, 20:00 min – 30:00 min transcribed by Lily

Cheney: If it were, we’d see a lot more than 10 million Americans infected with it, so there must be something that’s inhibiting the effective transmission of that agent given those numbers. Ten million versus let’s say one million. And also many people infected simply don’t get sick. At least they don’t get sick with CFS.

I’d like to turn next to that which I thought was a very interesting and very broad question, Judy, having to do with what is it about the biology and the pathophysiology of a retrovirus – let’s say it that way rather than XMRV it’s self – what is it about the biology and the pathophysiology of a retrovirus that fits with the syndrome of CFS?… Read More

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Posted by Cort Johnson

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Written by FernRhizome

1410-pcr.jpg(transcribed by Kim)

Cheney…in molecular biology from George Washington University and did her PhD work in the area of retrovirology, specifically how retroviruses, and specifically HIV, infect human monocytes. She studied under the legendary Dr. Frank Ruscetti at NCI, who is considered to be the father of human retrovirology, being involved in the discovery of the first human retrovirus, HTLV I in 1981. I think it’s also true, in my opinion anyway, that Judy is a superb scientist, very good in the laboratory, and it’s perhaps no accident that it needed that kind of superb scientist, laboratory scientist, to find this virus, as it has some difficulties associated with it in terms of looking at it and finding it and measuring it and we’ll get into that.… Read More

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Posted by Cort Johnson

The inability of the second UK XMRV study – this time from a ‘friendly’ research group headed by Dr. Groom – to find any XMRV in a very large sample of patients was rough news for sure. The ME Action Group in the UK took a rather resigned tone in their response while Dr. Vernon highlighted a few methodological issues but mainly concentrated on questions about that original cohort. Neither presented much good news for CFS patients as a cohort answer to the current problems would mean the virus is only present in a very select subset of patients.… Read More

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Written by Kelvin Lord

(Kelvin continues his evocative portrayal of his Ampligen treatment and his experiences with ME/CFS. Check his blog for more entries)

Treatment #7
inlaws.jpg
I don’t want to say that getting a needle stuck in your arm is getting routine, but a nice short summary of this morning’s Ampligen infusion would simply be “speed.” Because I have now tolerated the full dose twice last week, nurse Gwen ramped up the rate of my drip today and got the whole 400ml into my veins in less than 35 minutes. Including taking my vital signs, charting my progress, and the rest, the entire process took no more than an hour this morning!… Read More

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Posted by Cort Johnson

As expected Dr. Vernon, the Scientific Director of the CFIDS Association, delivered a rather comprehensive overview of the latest XMRV study in the Retrovirology journal. Dr. Vernon spent some time making clear who just who did this study; it was basically the best of UK retroviral researchers (one ‘world-renowned’) plus top ME/CFS UK researchers with long histories of CFS research.

Like Dr. Shephard she clearly felt this paper presented a significant hurdle for XMRV. She reported that the PCR methods were identical to those used in the original paper. When those techniques didn’t find any virus they looked harder using a different, much more sensitive PCR technique.… Read More

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Posted by Cort Johnson

UK researchers are not winning the hearts and minds of CFS patients – that’s for sure. Just a couple of uplifting weeks after Dr. Mikovits displayed so much enthusiasm and confidence in XMRV the other shoe has dropped. An Imperial College researcher said another negative study was coming and here it is; this UK study also failed to find virtually ANY evidence of XMRV in a large number of CFS patients. This study was similar and different from the Imperial College study.

Annette Whittemore said to be cognizant of who’s doing the studies – in this case, though, there doesn’t appear to be any bias to question, no damning history of behavioral emphasis to reflect upon; two members of the study, Dr.… Read More

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Let me begin by listing my reasons for writing this.

To share my experiences with everyone who’s interested but may never intend to see Dr. Peterson.To give some insight to anyone who might be considering making an appointment but may have concerns regarding what it may entailTo help someone prepare for a scheduled appointment to see Dr. Peterson

Becoming A Patient

Like many of you I had always dreamed of seeing a real, honest-to-goodness, CFS/ME specialist. Like most of you, over the course of 18+ years with this illness, I have vacillated between times of doing nothing medically with times of seeking out new treatment or alternative approaches.… Read More

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You can turn ME into WE!

February 14, 2010

Posted by Cort Johnson

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2008-09-22-together_klein.jpg

Turn ME into WE – Join the New Phoenix Rising Action Group

Visit our brand new action page and just leave us your email-adress:

http://action.phoenix-cfs.org/Read More

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Posted by Cort Johnson

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Written by Cort

1344-VernonReno.jpgAs expected Dr. Vernon delivered a rather comprehensive overview of the latest XMRV study in the Retrovirology journal. Dr. Vernon spent some time making clear who just who did this study; it was basically the best of UK retroviral researchers (one ‘world-renowned’) plus top ME/CFS UK researchers with long histories of CFS research.

Like Dr. Shephard she clearly felt this paper presented a significant hurdle for XMRV. She reported that the PCR methods were identical to those used in the original paper. When those techniques didn’t find any virus they looked harder using a different, much more sensitive PCR technique.… Read More

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Written by Cort

1299-CorrineBeach.jpgAllow me to share one final experience before I close. As you’re probably already aware, the bond between those of us with this illness is strong. If you’re like me, you’re best friends are PWC’s/ME. They’re the ones I contact when I really need support from someone who truly understands and vice versa. Our relationships with one another are special and, I believe, quite unique in that not only do our friends and families have difficulty understanding us but so does the medical community. This tends to present itself as a sort of intense loneliness that would be difficult to explain to anyone, even someone who is suffering from another illness.… Read More

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Of Butterflies and Chaos

February 11, 2010

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Written by Lisa


Detox.
1249-butterflies1.jpg

Most people are familiar with the word, products on store shelves promising to detoxify you from last night’s party or flush the junk food out of your system.

But what does it really mean?

The body has several pathways by which it will detoxify everything from that extra couple of shots last night to the cellular wastes produced by many biological processes which keep us alive. This system is also responsible for making sure the smog you inhale in big cities, the fabric softener used on the person’s coat standing next to you in line, or the remains of some pest spraying in your office over the weekend are all filtered out of your body without causing you to notice anything has occurred.… Read More

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1248-christinaGombar.jpg(Author Christina Gombar writes of her experiences coming to terms with another consequence of chronic fatigue syndrome: childlessness).

I consider myself less a survivor of infertility, than of the fertility industry.

Let me explain. As far as I know, I wasn’t infertile during my childbearing years. But when I was married and 30 and ready to start my family, I came down with a life-upending chronic illness. You realize you’re not parent material when you can’t recognize a box of Cheerios, forget how to use a phone, and unintentionally set fires in your own home.Read More

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Posted by Cort Johnson

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Written by Kelvin Lord

Treatment #6
1247-amped_lighteing.jpg
I promised I would tell the good, the bad and the ugly of this journey so today’s post will have two out of the three Let me get the bad out of the way first, because the most amazing thing happened to me after my last treatment I’m bursting to tell you about it.

First, let me set the stage.
As my prior post indicated, I was expecting to feel the “bad” side effects of the full 400ml of Ampligen after my treatment on Monday, and as predicted, I did.… Read More

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Posted by Cort Johnson

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Hope I am posting this OK (haven’t done it before…yikes!). Saw this on another website today and don’t think it has been brought up before…if it has I apologise.

The ME association are reportedly going to comment later in the week ……..

This editorial comment appeared in the British Medical Journal today (11 February 2010). It is written by Dr Alastair M Santhouse, Professor Matthew Hotopf and Professor Anthony David.

Published 11 February 2010, doi:10.1136/bmj.c738
Cite this as: BMJ 2010;340:c738

Editorials
Chronic fatigue syndrome

Defeatism among clinicians is undermining evidence that it can be treated

The recent acquittal of Kay Gilderdale, who had been charged with the attempted murder of her 31 year old daughter Lynn, has led to blanket press coverage this week.… Read More

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Posted by Cort Johnson

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Written by thefreeprisoner

Transcribed by thefreeprisoner

Bell: And perhaps we can open it up for questions.
One question only. So you’ve got to choose the best of those 20 questions…

Q1: You mentioned the pecentage of CFS patients with XMRV. Of healthies with XMRV, nobody knows the percentage of people with MS or ALS or… do you see what I’m saying? How many of them have XMRV?

Bell: Absolutely correct.

Q1: Where’s the specificitiy of…? [indaudible]

Bell: Well this would be an issue with XAND as a diagnostic classification. Let’s say that when the studies are done looking at MS, that half the people with MS have XMRV, well obviously it’s an important factor there.… Read More

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Written by Kelvin Lord

Treatment #4

coorslightlogosilver.jpgToday’s Ampligen infusion marked the fourth and last treatment at the 200ml “adjustment” or acclimation dosage. I’m now into a quaisi-routine, arriving at the clinic around 9:30AM every Monday and Thursday morning, and the procedure goes amazingly fast. In less than 3 minutes Gwen has me hooked up to the drip bag with “miracle drug” coursing through my pipes, followed by a bag of saline solution. The entire process takes about an hour total. Starting with next Monday’s I.V., I’ll be ramping up to the full 400ml dose, which they’ll infuse a little bit more slowly.… Read More

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Posted by Cort Johnson

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I came across a document* that shed more light on the pitfalls accompanying the search for a retrovirus in chronic fatigue syndrome in the 1990’s. The ups and the downs of the time with its more primitive technology were almost dizzying.1092-Elaine_defreita-330-_1_.jpg

Let’s take a step back and examine how the whole process got started. Hillary Johnson covered this in depth in Osler’s Web but the new paper piqued my interest. It was no surprise that it was the ever-creative Dr. Cheney that threw the CFS ball into Dr. DeFreitas’ court, but why did he choose her?… Read More

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February 4, 2010

Posted by Cort Johnson

I came across a document* that shed more light on the search for the first retrovirus in CFS.  It brought to mind how fraught with pitfalls the search for a retrovirus in chronic fatigue syndrome was in the 1990’s.  The ups and the downs of the time were almost dizzying.

Let’s take a step back and examine how the whole process got started. Hillary Johnson covered this in depth in Osler’s Web but the new paper piqued my interest. It was no surprise that it was the ever-creative Dr. Cheney that threw the CFS ball into Dr.… Read More

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