March 2010

Posted by Cort Johnson

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Written by Cort

1759-shapeimage_1..jpgThe patient community has been on a wild ride lately. No, no studies have been published but patients are digging deeper into the studies and coming up with some surprising findings.

Three er… Make That Two CFS XMRV Validation Studies?

http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research

After digging deeper into the cohort from the last Dutch study Parvofighter on the Phoenix Rising Forums has uncovered some disquieting facts about them. We knew that they were defined using the Oxford definition – which is not optimal, for sure – but what Parvofighter uncovered appears to go beyond using a poor definition.… Read More

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By Parvofighter1739-Stop.jpg

PART 1
Much has been made of the “well-characterized” or “well-defined” patient cohorts (http://www.bmj.com/cgi/content/abstract/340/feb25_1/c1018) of the failed XMRV-in-ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) replication attempts. “Well characterized” somberly implies that the patients studied were robustly and meaningfully comparable to those in the landmark Science XMRV study. Namely: Canadian/Fukuda Criteria Chronic Fatigue Syndrome patients with severe disability, reproducible immune abnormalities, cognitive deficits, prolonged, disabling fatigue, low V02 max, and multiple longitudinal measurements of clinical and laboratory abnormalities (http://www.sciencemag.org/cgi/content/full/1179052/DC1 ).

“Well-characterized” carries an aura of respectability – defying readers to challenge the issue of cohort selection in XMRV research.… Read More

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Written by Kelvin Lord

Treatment #16 – by Kelvin Lord
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Today was the best day I’ve had in a long time. Like my old 1976 Cutlass Supreme years ago, my engine was humming, my hydramatic transmission was smooth as butter, and I even had the “new car smell” on me. This old vehicle actually felt like all cylinders were firing with all four barrels opened up for a while today! Figuratively, I felt the wind on my face again today! And I couldn’t be happier.

What was my secret? Of course by reason of the title of my blog, I’ll start with the Ampligen.Read More

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Posted by Cort Johnson

Written by Cort

1671-aCM..jpgMarly Silverman and others at PANDORA and the Landford Foundation have big plans. She wants nothing less than to build the first NeuroEndocrineImmune Center for the research, treatment and education into diseases like Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, multiple chemical sensitivity and others in New Jersey. (Think the WPI’s Neuro-Immune Institute with the ‘Endocrine’ added. – think a WPI on the east coast)

NEID is taking a multi-disease approach because it believes that “the discoveries and advances made in anyone of the NEID’s, will be applicable at beneficial to the other NEID’s, thereby bringing researchers closer to a cure”.… Read More

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Posted by Cort Johnson

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Written by Cort

1656-MikeBeard..jpgIs there any more terrifying place for CFS patient to be than the emergency room the hospital? Sure, emergency rooms are upsetting for everybody but to be in emergency room knowing that the ER personnel’s biases towards you could leave you with substandard care, at the very time you need good care, is frightening . In an emergency room you want to be able to have trust but trust is a hard thing to come by when chronic fatigue syndrome patients step into almost any medical facility. No wonder that Dr.… Read More

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XMRV the Virus

March 14, 2010

Posted by Cort Johnson

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1630-XMRVnodules.gifThe Dr. Jekyll/Mr Hyde Virus - The more we learn about XMRV the more we can see how it could excite retrovirologists; it doesn’t appear to be like anything they’ve come across. XMRV is clearly not HIV; HIV is a lentivirus (not a gamma-retrovirus); HIV replicates well in immune cells (thus wiping out the T-Helper cells) – XMRV does not. A much complex retrovirus HIV has nine genes it can use to wreak havoc in the body – XMRV has only three. HIV replicates and mutates enough to often evade detection from antibodies and cytotoxic T-cells.… Read More

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Posted by Cort Johnson

The past few months have not been easy for XMRV. The head of the Dutch study flatly stated that he believed the WPI’s samples had been contaminated. Dr. Shepard’s assessment was nothing if not gloomy and Dr. Vernon’s seemed to suggest that if the WPI’s results stood up that they probably applied only for a select few patients.

Meanwhile the work at the WPI appears to be continuing as before. Certainly from the outside we don’t any sense that the discovery is falling apart; Dr. Mikovits is as public as ever and is continuing to talk at conferences and before groups.… Read More

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Posted by Cort Johnson

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The inability of anyone other than the WPI (and the NCI and Cleveland Clinic) to find XMRV is mysterious. In the face of three failed attempts to find any trace of XMRV in several hundred chronic fatigue syndrome patients questions are, of course, growing about the WPI’s find. Yes, questions have been raised about the efficacy of each of the three studies – all of them may have had their flaws and depending who you talk to, some of them have major flaws – yet it’s alarming that no one has yet found even one CFS patient with an XMRV infection.… Read More

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Written by flybro

By Flybro

I’m now on day 14 or 15, of feeling really well.

Back in January I started to take 50mg of clarithomycin twice a day. My partner crushes a 500mg tab and fills 10 small capsules with equal amounts, and increases the dose to my ‘wellness/symptoms’, the most it is increased by is 50mg in one day.

I was doing OK in January, then I had a busy week at the beginning of Feb, which left me quite rough for about ten days.

Just as I was starting to feel well again I got what I thought at first, was a bout of really bad IBS.… Read More

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Written by Kelvin Lord

Kelvin’s Continuing Blog on his Ampligen and other Treatments

My blog today includes my top 5 Treatment Recommendations outside of Ampligen – things you may need to “push” your Doctor to give you.
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Someone asked me recently: “But what can I do if I am not on Ampligen? My Doctor has no suggestions for me!” My response was longer than what I am about to share with you here, but the heart of my answer was “Push your Doctor to let you try things others are using.”

Perhaps that seems like a Sisyphean pursuit to you with your physician, like pushing a boulder up a mountain, but I can tell you it’s worth the effort.… Read More

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Living Outside the Camp

March 9, 2010

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Written by Jody

It is a fearsome thing to find oneself living outside the camp. As the sickness of Chronic Fatigue Syn1588-thumbnail.aspx_q_.jpgdrome causes the circle of life to shrink, as the chronic element reduces our contacts with other people, we find ourselves moving (or being moved) further and further away from the campfire.

And as we lose more and more of our ability to take care of ourselves, the need for help from other people in our lives becomes more stark. The less we have of it, the more we are aware of how much we need it, and the more helpless we become … and the more aware of our helplessness.… Read More

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Posted by Cort Johnson

1573-bug..png A recent security issue has forced us to upgrade to a new version of Vbulletin. This brings along lot’s of problems at the moment:

  • being logged out constantly
  • home page messed up
  • trouble with PM’s

Cort is currently communicating with VBulletin to solve these problems. This can take days, but we don’t want to close down the forum for this reason. We advice you to ignore the bugs for the moment :innocent1:

You can report problems in the comments section here.

Frank… Read More

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Posted by Cort Johnson

The Recovery/Recovering Stories : ME/CFS is heterogeneous disorder with many different subsets. None of the treatments in the Recovery/Recovering stories will fit all or even most patients.

In May of last year I received an e-mail from Berit Frivold a chronic fatigue syndrome (ME/CFS) patient who’d been ill for 13 years. Like many people she’d tried just about everything she could get her hands on and nothing had worked. She noted that

“I have been sick for almost 13 years now, kicking and screaming all the way, always looking for a way out, trying this, that, and the other, and always planning to be on my feet again sometime next week or next month (but) after 13 years I am more sick than ever, in spite of all the positive thinking, “can-do”-attitude, research, treatments and specialists of different calibers and price ranges, and so on.

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Written by Kelvin Lord

Treatment #12 : by Kelvin Lord
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I hope this doesn’t gross you out, but yesterday I ran to the toilet 9 times and had nothing to show for it. Yes, another surprise, yet not altogether bad result of my Ampligen treatment. But one I actually was happy about. Let me explain.

I guess I’m now considered a veteran - because my twelfth Ampligen infusion went off like clockwork. Gwen found a nice vein the first try, adjusted the rate to take 40 minutes, and because by coincidence we were the only ones in the room that day, we chatted about her son, and life in general.… Read More

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Written by Kelvin Lord

Treatment #11 by Kelvin Lord
house-m-d-gregory-house.jpgI made three very small changes in my protocol today, and although I really can’t determine scientifically their effect, experientially I can say that while all three were very minor, percentage-wise, collectively they added up to a big difference in how I felt. As usual, to me it is the little things that seem to add up, either positively or negatively – to how I feel overall. It didn’t used to be that way, but as a person with a mysterious virus roaming around his body, and an immune system working it’s little ass off trying to fight it, sometimes just a 1% change in something I do, or don’t do, makes a difference.… Read More

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Posted by Cort Johnson

A Recovering/Recovering Story - The wide range of recovering stories demonstrate how varied the ME/CFS population is; each story will only apply to a subset of people with ME/CFS

(Vistide is a very strong drug that Dr. Peterson has been using in select patients for several years now. HVS has been telling about his experiences with the drug on the Phoenix Rising Forums and agreed to lay out his experiences in a more organized fashion)

Why did you decide to see Dr. Peterson?

I had a sudden illness after a severe cold/flu in March ’08. Initially I had a diagnosis of mono with titers off the charts.… Read More

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