CD57: A Marker for ARVs?

 

One of the biggest problems in monitoring ME/CFS patients on antiretroviral therapy is the lack of markers to evaluate the drugs’ effects on the immune system.  For patients on medications to treat diseases like HIV and hepatitis, often their immune markers improve and the viral loads decrease well before the patients feel better.  This phenomenon is particularly common in patients with longstanding illness.

CD57

However, as there is no commercial viral-load test yet for XMRV and as immune markers haven’t been established, patients on antiretroviral (ARV) cocktails are flying blind.  One patient who’s been on ARVs for six months reports to CFS Central that although she isn’t feeling significantly better physically, two markers have been steadily rising:  CD57 and Vitamin D.  CD57 is a natural killer cell often depressed in Lyme and CFS patients.  The norm is 60 to 360, but some Lyme-literate physicians believe the count should be at least a hundred, and that the curve has been skewed due to so many Lyme patients getting tested. 

Prior to her initiating therapy, this patient’s CD57 hovered around 25—and it had been stuck there for several years since a serious crash that left her mostly housebound.  Prior to that crash, she was ill but more functional, and her CD57 count registered between 55 and 60. After six months on ARVs her CD57 is 74, an increase of 49 points. 

Vitamin D

Her vitamin D levels have jumped from 31, where they had been for several years, to 47.  Optimal is considered 50 to 125 nMol/L.  Prior to her being on ARVs, five thousand IUs of Vitamin D daily for three years had improved her vitamin D status only from 29 to 31.

Of course this patient’s findings are purely anecdotal, but they shouldn’t be dismissed either.  Vitamin D is easy to test, and in the U.S., Labcorp tests for CD57.

Cholesterol and blood sugar

Two other interesting tidbits:  A few patients have reported to CFS Central that their blood sugar has normalized on ARVs and their cholesterol has dropped.  One pre-diabetic patient forced to eat an Atkins diet of mostly protein and fat to avoid spikes in blood sugar after meals no longer has that problem on ARVs and can eat carbohydrates without any increase in blood sugar.  This is in contrast to the more common reaction of HIV patients on ARVs, who can experience both an increase in cholesterol and blood sugar.

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I'd be interested in hearing from patients who've had significant changes in their vitamin D or CD57 status on ARVs—or anything else noteworthy.  mindykitei.cfscentral@comcast.net

THE CROI INSIDER

An HIV clinician who attended last week’s CROI (Conference on Retroviruses and Opportunistic Infections) in Boston told CFS Central that it was pretty much a bust all around, but that would be par for the course with CROI, which is “notoriously good at keeping out those they don’t want in.”  As far as the XMRV presentations, the physician said it was glaringly obvious to him and to others that the opposing side—those who have found the retrovirus XMRV in ME/CFS patients and in prostate cancer patients—wasn’t being heard. 

His impressions of the discussions in the hallways were that the HIV researchers thought XMRV was a joke, but that many clinicians were taking XMRV seriously.  It reminded him of the early days of HIV when the doctors who were treating these sick patients knew something was seriously wrong with them, while the official word from government was much ado about nothing. “The feeling that I got,” he said, “was the same underlying sense of information being tightly controlled.”

THE DEVIL MADE ME DO IT

Below is my response to CFIDS Association board member Jennifer Spotila's comments from yesterday.  Spotila was responding to my "Bad Company" blog post, particularly to my commentary on CAA President Kim McCleary's statement to CNN about the PACE trial.  McCleary told CNN:  “I think it would be challenging, at least in the U.S. system, to purchase the services that they've tested in this trial,” adding this:  The alphabet soup of acronyms that represent the interventions used in Britain is “just not something that our health care service offers, is reimbursable, or is really available here.” And, finally, this: “It's kind of a shame that we're still limited to talking about approaches to coping mechanisms as the only therapy that's available.” 

Spotila's comments are below mine.

Jennifer Spotila,

If McCleary hadn't made those comments to CNN, CNN wouldn’t have included those comments. No one held a gun to McCleary’s head or laid a cattle prod to her feet and forced her to utter those problematic remarks. She did that all on her own. Granted, it’s difficult to articulate a string of perfect quotes, but McCleary’s endorsement of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) was inexcusable in my view and the view of many patients. After all these years, there is no excuse for defending these ineffective therapies.

Defending McCleary’s statements, you wrote: “Both reporters had also been prepped by the authors of the PACE trial to expect and dispute the objections raised by McCleary and other advocates to the study.”  Prepped?  Says who?  Jennifer, each side makes his or her case.  You’re an attorney.  Think of it like the defense and the prosecution in a murder trial. That’s how it works.  McCleary’s job was to make her points, not to endorse those of the opposing side.

Kim McClearly could have told CNN something like this:  “The PACE trial is problematic, and here are some reasons why. The selection process eliminated most bona fide CFS patients.  Instead, the PACE patients had idiopathic fatigue and depression. Cognitive behavioral therapy and graded exercise therapy are primarily helpful for those with idiopathic fatigue and depression, not those with Chronic Fatigue Syndrome. In fact, the hallmark of CFS is post-exertional crashing, so graded exercise therapy would make the symptoms of most CFS patients worse.

“Many patients with CFS are severely ill and suffer from seizures; swollen lymph nodes; fevers; autonomic dysfunction that makes it difficult or impossible to sit or stand; heart failure; immune dysfunction, including reactivation of herpes viruses; and rare cancers. Some patients are dying, others are consigned to a living death, and compelling evidence points to a newly discovered retroviral infection in these patients that’s similar to the one that causes HIV. 

"Despite its trivial name, this is not a trivial disease.  To suggest that patients can power through CFS through GET or CBT would be as incorrect as suggesting that those with Parkinson’s disease or multiple sclerosis or AIDS can be restored to health simply with exercise and a positive attitude.”

Jennifer Spotila, even if I had been on hallucinogens, I couldn’t have said something as unhelpful as what McCleary told CNN.

On another note, you wrote, “The Association did make changes to its website and operations in response to feedback we received through Khaly's postings and other venues.”  Khaly Castle posted a reply to you that said in her view there were no significant changes (see her response, below). Jennifer, I would appreciate if you would tell the readers of CFS Central what those changes were, and let the patients weigh in on their significance.

The CAA survey on the patient forum Phoenix Rising gives patients the choice of voting that the CAA is doing great, or needs some minor changes, or needs changes in direction, or needs changes in both direction and leadership.  So far, 143 out of 153 patients—that’s 93 percent—have voted for changes in direction and leadership.  I would argue that the CAA is doing poorly on the Phoenix Rising survey because it’s not representing what the patients want and need. 

Patients deserve better representation.  Patients deserve a CAA that strongly opposes the money spent on CBT and GET studies/treatment for ME/CFS. Patients deserve bona fide biomedical research, not this appalling, make-believe, psychoneurotic PACE study.  Patients, in my view, deserve an advocacy organization that actually advocates for them.

You wrote: “I strongly encourage you to balance your reporting on the advocate point of view by interviewing a diverse sample of us.”  Jennifer, I strongly encourage you to hear what the patients are saying and to stop defending the indefensible:  McCleary’s statements to CNN are inexcusable.

Jennifer Spotila's remarks:

Mindy, If you had contacted me, I would have been happy to answer any questions you have about the Association or the incidents you cite here. I did respond to Khaly Castle in 2009. The Association did make changes to its website and operations in response to feedback we received through Khaly's postings and other venues. 

Kim McCleary gave a very lengthy interview on PACE to CNN, and another to NPR. Both reporters chose to use only one quote from those interviews. Both reporters had also been prepped by the authors of the PACE trial to expect and dispute the objections raised by McCleary and other advocates to the study. Their questions to McCleary and the pieces they produced reflect this. 

I strongly encourage you to balance your reporting on the advocate point of view by interviewing a diverse sample of us. Reasonable minds can and do differ on many aspects of CFS advocacy. I continue to believe that dialogue serves us better than monologue.   

Khaly Castle's response to Jennifer Spotila:

Jennifer, to say that the CAA responded would be accurate. To say that the CAA responded in a meaningful way would be inaccurate. In 2009, a thread was started on Phoenix Rising. The discussion over there continues to this day, about basically the same issues.

After we tried to have a meaningful dialogue, CAA was asked to help us fight the DSM5 issues. The response was meager and meaningless, basically boiling down to the suggestion that we should go ask the IACFS/ME as CAA did not feel informed enough to take a stance. I notice the same conversation evolving regarding ICD codes right now.

Mindy already cited and linked to two of my articles voicing some of the concerns we had in 2009. We are still facing the same concerns...lack of adequate response to ill-defined cohorts in X-negative studies, inability to take a stand that CFS is NOT what the CDC likes to describe, inability to advocate for the sickest of us, inability to verbalize a distinction between this illness and the grab bag of fatiguing illnesses....on and on.

For more on some of these issues, see: http://www.cfsuntied.com/archivedblog4.html#caaxmrv

You will notice that not much has changed.

A few months ago, after the "Inside Voices" article was presented to us, I asked the CAA on Facebook if the CAA still considered itself an advocacy organization, or if it had decided to become a science and research organization. You answered, that they were indeed an advocacy organization, but that there were many ways to advocate. The conversation and surrounding events are documented here: http://cfsuntied.com/blog2/2010/10/07/be-vewy-vewy-quiet-im-hunting-wabbits/

This can no longer be about promotion of promotion. It has to be promotion of what will save us. Many of us are facing not only the end of our ropes, but the end of our time. The clock is ticking. 

FLIP WILSON on ED SULLIVAN: THE DEVIL MADE ME DO IT

BAD COMPANY

Why Some Patients Have Had Enough 
of the CAA

When it comes to the CFIDS Association of America, patients Khaly Castle, Otis Quila and Liz Willow have reached critical mass.  They’ve just devised a “Petition to disassociate from CFIDS Association of America as our advocacy representative” because they believe that the CAA isn’t doing its job.  In one day, 205 patients have signed the petition, with a goal of one thousand signatures from all over the world.

Castle, Quila and Willow will present the petition at the May 2011 Chronic Fatigue Syndrome Advisory Committee meeting and also let the NIH and the CDC know that the CFIDS Association no longer speaks for the majority of patients. Explains Liz Willow, “[NIH administrator] Dennis Mangan realizes the patient community is diverse and reaches out to a number of individual advocates, Facebook page founders and bloggers on a regular basis.  But the CAA still seems to be perceived by many government officials as representative of patient wishes.  We didn't feel we could wait for a new organization to establish itself before rolling out the petition.  Patient sentiment for this type of petition is high, and we wanted to capture that momentum.”

Brewing dissatisfaction
The dissatisfaction with the CAA has been brewing for a long time but deepened after the first paper linking XMRV to ME/CFS was published in October of 2009.  Khaly Castle observed that the CAA maintained “an air of skepticism when they could have instead taken this new piece of science and turned it into a platform for some pretty powerful advocacy. In my mind,” Castle contends, “it just confirmed that this group is nothing but an arm of the entity it had contracted itself to for so long:  the CDC.”

Brian Smith and Jennifer Spotila 
A blogger as well as a patient, Castle in 2009 wrote two articles on the CAA that garnered huge response from patients.  (To read the articles, click here and here.)  After Castle posted them, CAA board member Brian Smith told her on Facebook that the CAA was listening.  “Then I never heard from him again, despite friend-requesting him,” Castle recalls.  However, Jennifer Spotila, who at the time was board president, contacted Castle directly, asking her to forward whatever patients wanted to tell the CAA. 

That’s when Castle started a new post, “CFIDS Association— What do you want to say to them?”  Gathering the hundreds of patient comments and questions that resulted, she forwarded them to Spotila.  But in the end, says Castle, “We got very little feedback and little or no visible change from the CAA.”

McCleary's response to the PACE trial
Most recently, it’s been CAA President Kim Kenney McClearly’s reaction to the PACE trials that Castle, Quila and Willow have found problematic. Of the PACE trial, which endorsed cognitive behavioral therapy and exercise for CFS, McClearly rattled off to CNN a peculiar commentary that appeared to endorse the bogus findings: “I think it would be challenging, at least in the U.S. system, to purchase the services that they've tested in this trial,” McClearly stated, adding this:  The alphabet soup of acronyms that represent the interventions used in Britain is “just not something that our health care service offers, is reimbursable, or is really available here.” And, finally, this lackluster shrug: “It's kind of a shame that we're still limited to talking about approaches to coping mechanisms as the only therapy that's available.”

Castle says that with McCleary’s response to the PACE trial, it’s clear that the CAA’s advocating for a chronic fatigue light kind of illness that’s primarily about generalized fatigue—as opposed to the serious neuroimmune disease that ME/CFS really is.  The result is “muddying the diagnostic waters,” Castle says.  “This is not only unhelpful, it's extremely harmful.”

Suzanne Vernon and spinal fluid
McCleary isn’t the only CAA representative who’s been a problem.  Last week Dr. Steven Schutzer’s team at the University of Medicine and Dentistry of New Jersey published on a distinct abnormal protein signature in the spinal fluid of ME/CFS patients, which apparently was a yawn to CAA Scientific Director Suzanne Vernon, who told the Wall Street Journal’s Amy Dockser Marcus: “It’s difficult to have a diagnostic test based on spinal fluid. You can’t just go poking everyone in the spine.” 

Vote to be heard
On the Phoenix Rising patient forum, so far 147 patients have participated in a new CAA poll, with 138 voting that it’s time for a change in direction and leadership. Cast your vote on Phoenix Rising and be heard.  If you believe the CAA doesn’t speak for you, cast your vote on the “Petition to disassociate from CFIDS Association of America as our advocacy representative.”