My Notes from NIH ME/CFS State of Knowledge Workshop

NOTE:  The purpose of this 2-day workshop was for scientists to present their latest research findings to other scientists.  As such, the presentations were aimed at fellow medical scientists, and the details were often over my head.  I do not have a medical background (and my last biology class was several decades ago!). 

Here, I am summarizing only a few of the key conclusions from certain presentations – this is by no means a comprehensive summary.  I didn’t watch all the presentations (had to take my naps and take care of my family) and some I left out simply because they were highly scientific and/or theoretical with little of practical use to patients today.  Also, I didn't start taking notes until Day 2 (I was just too sick), though I've included some key points from Day 1 here).  You can watch any or all of the presentations online, referring to the meeting agenda to help find the ones you want (they haven't yet posted the videos online, but you should be able to find links by next week at the NIH Videocasting website, unless the government shuts down).

DAY 1

INTRODUCTION:

Dr. Anthony Komaroff, Harvard, presented an overview of ME/CFS and its symptoms.

Dr. Leonard Jason, DePaul University, presented an overview of the various definitions of ME/CFS, including their flaws.

INFECTIONS – Each of the four following presenters talked about the role of various infectious agents in ME/CFS:

Dr. Glaser, Ohio State – EBV and CFS

Dr. Chia, EVMED – Role of Enteroviruses in CFS

XMRV (both of these presentations are HIGHLY simplified here – just the overall conclusions):

Dr. Mikovitz, WPI – XMRV in ME/CFS

• Dr. Mikovitz presented the latest findings on XMRV from WPI and focused primarily on all the reasons why contamination is NOT an issue and how they have proven this and reconfirmed their positive XMRV results in multiple ways.
• In a summary at the end of the Workshop, Dr. Mikovotz pointed out that HIV does not cause AIDS – the official definition of AIDS says it is caused by the combination of HIV plus one of many other co-infections and that it could possibly be the same case with XMRV and ME/CFS (where the co-infections are EBV, HHV-6, Lyme, enteroviruses, etc.).

Dr. Coffin, National Cancer Institute – Origins of XMRV and MLV

• Dr. Coffin presented his data on how XMRV and MLV originated from mice and contaminated the prostrate cancer cell lines and therefore concludes the XMRV positive studies are due to contamination.

(See the problem here?  There was some heated debate but no resolution yet of this issue.  Bottom line:  The scientific community as a whole has not yet come to a conclusion as to whether XMRV is a critical element of ME/CFS.  Some factions say yes, absolutely, no question; other factions say no way, not possible.  Studies are already planned and started to test these theories with blind, coded samples – These are detailed, thorough studies with answers expected perhaps a year or more from now.  Stay tuned.)

Dr. Light, University of Utah – Gene Expression Post-exercise in CFS vs. Other Illnesses

• There were clear differences post-exercise in the ME/CFS patients to differentiate them from patients with MS, fibromyalgia, and healthy controls (all participants were sedentary and deconditioned).

Dr. Christopher Snell – Exercise Intolerance

• Dr. Snell and his group at University of Pacific/Pacific Fatigue Lab have been doing the BEST research on exercise intolerance in CFS for over a decade now (my opinion, but widely held!)
• He described how they use cardiopulmonary exercise testing to characterize and define many of the effects of exercise on people with ME/CFS and clearly prove CFS is different from deconditioning.
• Their tests look at not just during exercise but also 24 hours and 48 hours AFTER exercise (HURRAY!).
• You can’t tell CFS patients from sedentary controls at baseline, but there are clear and distinct changes in CFS patients in the days following exercise.  We all know this already, of course, but this is clear, scientific evidence to show how disabling and critical PEM is for us.

Dr. Rowe – Orthostatic Intolerance and CFS

• General overview of OI in CFS (surprisingly, it seemed that some of the researchers focused in single areas weren’t even aware that OI is part of CFS).
• Studies show 95% of people with ME/CFS have OI (either POTS or NMH or both)
• Emphasized that OI underlies most symptoms of ME/CFS and is a critical component.
• Another speaker mentioned that studies show that LOW doses of propranolol (the beta blocker I take) was more effective at controlling POTS than high doses – I’ve heard the same conclusion from individual patients.
• For more information, watch this presentation online and/or check out Dr. Rowe’s CAA Webinar on OI (you can watch it on Youtube, read the slides, or read his full article):

DAY 2

Dr. Klimas – Biomarkers

• There are many immune system biomarkers identified that could be used for diagnostic purposes and to target treatment areas, especially those related to NK cell function and cytokines.
• Advances in testing in the last few years make these biomarkers more reliable.
• Dr. Klimas already uses many of these tests in her practice to diagnose, to categorize patients, and to target treatments.

Dr. Cook (U of Wisconsin) - Neuroimaging Biomarkers

• Data from neuroimaging has been used to document brain changes in CFS during mental activities: these show that people with CFS must work harder and use more of their brain to do the same tasks as healthy controls.
• This area is probably not ready yet to be used as a biomarker, but the research is promising and should be continued.
• Dr. Rowe asked if they can do brain imaging on patients while standing – not yet!

Dr. Dean, National Cancer Institute – Identifying Genes and Genetic Risk in Diseases

• Genomes have been identified for many complex diseases.
• One challenge: in order to identify genes, there need to be clear ways of defining and classifying the illness (i.e. biomarkers) – a problem with ME/CFS.
• Although this technology is not quite ready and cheap enough to apply to CFS as a whole right now (maybe 5-10 years from now), it can be used for individuals and for families (in my opinion, this is a critical area that hasn’t been investigated enough yet – incidence of ME/CFS in families).

TREATMENT:

Dr. Fred Friedberg, SUNY Stony Brook – Self-Management of ME/CFS and the Meaning of Improvement

• Not much new here - Self-management techniques (pacing, finding positive activities to improve satisfaction that don’t push past physical limits) can help patients and deserve more attention.
• He also referred to the PACE trials – showed data that CBT can indeed help some CFS patients but the problem is that the UK presents it as a first-line (and often ONLY) “treatment.”  Also explained that GET can be harmful if patients are pushing past their limits (big news, right?)

Dr. Biaggioni, Vanderbilt – POTS and CFS

• Another excellent presentation on OI, focused on POTS.
• Beta blockers are the best treatment for patients with POTS and CFS.
• Reinforced yesterday’s point that very low doses of beta blockers work best, in order to prevent the side effect of fatigue, even as low as 20 mg of propranolol (which is what I take).  They prefer a short-acting beta blocker (propranolol) because it’s impossible to titrate the longer-acting ones to a low enough dose.
• Important to avoid deconditioning  - the more time we spend lying down, the worse our POTS gets – but this is a challenge since just standing up can drive our HR way above the anaerobic threshold.  Can try recumbent bike or any exercise in water (because the water pressure helps to control BP and HR).  Beta blockers can allow POTS patients to exercise by lowering HR (as has been my experience).

Dr. Lucinda Bateman, Fatigue Consultation Clinic (Utah) – Treatment Overview

• She presented an excellent overview of how she treats patients:

1.     Diagnose accurately.

2.     Teach the concept of pacing.

3.     Address symptoms that alter function and illness severity (including despair, disordered sleep, pain, deconditioning - very carefully, adapting to illness severity, fatigue).  All of these symptoms can be effectively treated.

4.     Treat Orthostatic Intolerance and Low Blood Volume (using hydration, increased sodium, meds like Florinef, midodrine, and beta blockers).

5.     Treat Infections/immune dysfunction (with anti-virals, gamma globulin, Immunovir, Ampligen).

6.     Treat HPA Axis Dysregulation (HRT, thyroid, other hormones that might be lacking).

7.     Other treatments: Magnesium for pain, Vitamin B12 helps some patients.

IACFS is working on Treatment Guidelines – doctors can download Dr. Bateman’s intake forms at IACFS website.

SUMMARY SESSION:

• Stratification – categorizing patients – is critically important since the illness is so heterogenous but these subtypes must be standardized.
• Integration:  important to look at the whole illness, from a molecular level to a clinical level and share findings.
• Case definitions must be standardized, and standard operating procedures/methods should be standardized among researchers.
• Reproducible biomarkers are a must for future research to move forward.

• Director of NIH stopped by to address the group! He’d intended to spend more time in the workshop but was pulled into emergency meetings because of the likely government shut-down.  He expressed strong NIH support for furthering ME/CFS research, though he warned we are probably looking at times of record-low funding coming up.