Dr. Peterson Talks - On Severely Ill Chronic Fatigue Syndrome Patients
(This blog was based on Dr. Peterson's recent talk in Sweden. I added several sections such as the Mike Dessin interlude. They are outlined in parentheses.)
Dr. Daniel Peterson
Dr. Peterson was at the epicenter of Incline Village outbreak three decades ago that helped put chronic fatigue syndrome on the map. He's been on the cutting edge of immunotherapies and antivirals ever since. He's been using and gathering data on Ampligen for decades. He was the first to dare to use the powerful antiviral Vistide in ME/CFS and he used it successfully.
Long before VO2 max exercise equipment showed up in ME/CFS experts offices he was using it. He saved his spinal fluid samples for decades waiting for the right investigator to show up. He was the first to recognize the possibility that non-Hodgkin's lymphoma is increased in ME/CFS and pushed for studies.His work with the Simmaron Research Institute has led him to collaborate with research groups around the world. A superb diagnostician, his recent characterization of ME/CFS patients into typical and atypical patients resulted in a successful spinal study - and introduced a subset researchers now need to be aware of. He and the Simmaron Research Institute produced the Immunology Workshop in an attempt to make immune testing a standard part of a physician's protocol. He may have treated more people with ME/CFS than anyone else in the world.Dr. Peterson recently spoke on severely ill ME/CFS in Sweden - a place he's returned to again and again. Thankfully the Swedes have been videotaping their conferences for years. Let's see what he had to say.
The Severely Ill
Peterson has a reputation for saying it like it is. He started off his talk stating that the really severely ill are like the elephant in the room everyone has danced around for years. Not because they're not important but because so little is known about them. That, however, is changing.Peterson pointed that prevalence estimates of the severely ill (25%) are simply guesses at this point. The really severely ill are so debilitated that they rare show up in doctor's offices, and almost never participate in studies. They are often self-diagnosed and most lack insurance. Visits to the emergency room are rare simply because the emergency room has nothing to offer them and often makes them worse.Interlude - Mike Dessin's Story
Mike Dessin is one of the few severely ill ME/CFS patients to have fully recovered. He has an interesting tie-in with Dr. Peterson. When Mike was still relatively healthy he meet Dr. Peterson and afterwards sent his test results to him. Peterson never treated Mike but Mike's test results were all wrong end and Peterson predicted Mike was in for rough times.He couldn't have been more correct. Mike's health continued to worsen until he was forced to retreat first to his Dad's house and finally, too sensitive to endure human company, into an apartment. For over a year Mike lived in a blacked out apartment room wearing eye shades even in the dark. He became unable to tolerate foods and became emaciated.He's provided a stunning account of what the very severely ill experience.I was completely bedridden and unable to lean up more than a few inches. I was unable to read, write, understand words when spoken too, or complete a thought process. I would not be able to tolerate touch, whispers or even be able to sustain a mere thought process without getting over stimulated!!! If I was pushed too far mentally I would have a seizure from the over-stimulation.He believes the overstimulation problems are the most problematic severe ME/CFS patients face.I believe by far this is the most debilitating and confining element of severe M.E. This is what drives people with M.E. into complete isolation.Simply getting to a doctor's office was challenging. Wearing eye shades and ear muffs he said:"I crawled into my dad’s car. We arrived at the doctor’s office where I crawled my way into the lobby. I laid in the lobby until my name was called. Dad lifted me up onto the table and the doctor walked in. At this point I could only stay conscious when I was stimulated so he put his hands on my shoulders to awaken me."The first sign that Mike was beginning to recover was finding a blob of fat on his tush. He began to recognize the items around him, to tolerate light, eat and read short sentences.Mike Dessin is living proof that it's possible to go right up to the edge and almost fully recover. He's also a living example of how difficult it is treat the severely ill. Other patients visited his doctor yet none responded as Mike did.
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Read the rest of Mike Dessin's Recovery Story here
Dr. Peterson's characterization of the severe or very severe ill patients as being "bed bound" at some point in their illness brings up the question whether people who are bed bound at some point in their illness end up being the most difficult to treat. That idea would seem to fit the Dubbo findings which indicated that people with the most severe symptoms after an infection were most likely to come down with ME/CFS.How sick did you get in the first couple of years - and how are you now? Take
Peterson noted, however, that ME/CFS is not unidirectional - that relapses and remissions can occur unpredictably.(One of Dr. Peterson's patients, Corinne Blandino, provides a poignant example of this unpredictability. When she first saw Dr. Peterson she had been wheelchair bound for many years. She improved to the point where she was able to get out and drive and travel but then suddenly and unexpectedly she relapsed. Later she was found to have a spinal fluid lesion.A Health Rising survey indicated that a subset of patients experience dramatic remissions that are often at some point followed by relapses. Some have undergone several cycles of remissions and relapses.)
Peterson also noted that a CDC study found that unless significant recovery began in the first five years of the illness complete recovery is unlikely. When asked later about the importance of treating patients early he said it took him years to learn that the best approach with acute post-infection patients - people who have recently become ill - was to immediately aggressively treat them with immunoglobulin and antivirals.What about longer term patients - the ones that are probably most prone to be severely ill. Dr. Horning cautioned that the CFI's immune study showing drops in immune activity after three years needs to be replicated but suggested that immunomodulating drugs like Ampligen and Anakinra could be helpful in longer duration patients.[embed]https://www.youtube.com/watch?v=xD6KZ5q0Zxc[/embed]Dr. Peterson noted that the severely ill are the most difficult patients to treat and have the most guarded outcomes.(Whitney Dafoe is a good example of how difficult to treat these patients can be. Whitney is located in the San Francisco Bay area - as ME/CFS knowledgeable a place as any. Whitney has had the resources to try many different options but all have failed and some have made him worse. The same was true for Mike Dessin. Glutathione IV's, alpha lipoic acid and other detoxification treatments that have been helpful for some patients left him worse off and may have set the stage for his almost complete relapse.
Neither were rapid onset either. While both probably had infectious onset their slide to debilitating health was a gradual one. They just kept slipping backwards.Many doctors probably don’t know where to start and are probably justifiably worried if they treat the severely ill aggressively they're going to do something to kill them. These patients are delicate in the extreme.)
Basic Support
Dr. Peterson stated, however, there are basic things any doctor can do. Hydration, nutrition, appropriate physical therapy and "intervention based on present pathophysiology" are standard approaches to ME/CFS that can be employed. He recommended the Primer for Clinical Practitioners produced by the IACFS/ME for a good symptom by symptom approach to ME/CFS.Peterson cautioned that rigorous pacing and energy conservation should not be considered the only treatments but strongly recommended them. He's found the use of heart rate and blood pressure monitoring devices such as the Fitbit and Apple Watch to be helpful in keeping patients "in the zone".
The effects of immobilization can be high. He recommend simple stretching to reduce muscle atrophy and joint problems; saline, midodrine and florinef to combat orthostatic intolerance; and IV nutrition to combat malnutrition. Peterson stated that he starts IV nutrition early.Turning off the TV, reducing exposure to computer screens, wearing sunglasses, etc. can help with over stimulation.In the discussion period Dr. Peterson said the question he always asks all patients is what is the one symptom you want most dealt with - just don't choose fatigue. If brain-fog is a big problem he uses brain scans (SPECT, MRI) to inform his treatment options. Increased intracranial pressure might lead to the use of Diamox, inflammation could trigger the use of anti-inflammatories, brainstem problems could result in Nuvigil or even amphetamine-based drugs. If orthostatic problems show up that interfere with blood flows to the brain Dr. Peterson said he goes after those aggressively.When asked about long term anti-inflammatory therapy Dr. Peterson said he's seen good short-term responses (increased energy and mental clarity) with steroids but worried about their long term effects. He hasn't had much experience with fecal transplants to assess them but feels he's seen enough people trying stem cell transplants to suggest they're not a viable option.
Drugs
Ampligen
The good news on the drug front is that Ampligen has been approved for use in Europe and Turkey. Ampligen is an immune stimulator and antiviral that's been approved for limited use in the U.S. since 1988. It's not easy to get, though, and is quite expensive. It's one of the few drugs shown to increase NK cell activity. Dr. Peterson gave Ampligen a strong endorsement stating that it's the only therapy he's seen in his three decades of work that's been able to return ME/CFS patients to full health. He gets about a 70% response rate (not all of which get such strong results.)
Anakinra
Anakinra - a soon to begin placebo-controlled, double-blinded trial in the Netherlands, Anakinra presents an intriguing possibility. Anakinra blocks the production of two cytokines, IL-1b and TNF-a, that are greatly increased in some ME/CFS patients. A safe drug, Dr. Peterson saw no reason not to test it and other cytokine blockers on the market right now.(The Anakinra sudy authors noted that concentrations of cytokines in the blood rarely reflect what is happening in the brain. They proposed, therefore that the only way to accurately assess a cytokine's contributions to a disease is to block them using drugs and see what happens.
Rituximab and Cytoxan
He also pointed to the Rituximab and Cytoxan trials now underway in Norway as possible treatments.Caregivers are an incredibly important factor for the severely ill. Dr. Peterson encouraged caregivers to get more support for themselves, to take time for themselves and get counseling if necessary.
- A Caregivers Forum is present on Health Rising. (Registration is required to see the Caregivers Forum.)
Hope for the Future
Open Medicine Foundation Study - Dr. Peterson highlighted the Ron Davis/Open Medicine Foundation severely ill big data study and proposed that ME/CFS's signature does indeed burn more brightly in them. While welcoming it, he added some cautions regarding the small sample size and the enormous data set that will be generated.He added that newer technologies such as Next Generation Sequencing (NGS) will enable more and more patients to be assessed more cheaply. (Ron Davis has reported that most of the methodological issues the study posed have been taken care and the study will begin soon.)CDC Study - The huge, (huge) CDC multisite study will search the serum and saliva of 800 people (!) for biomarkers using RNA/DNA analysis and other techniques. This phase will also include 40 severely ill patients. That's just five people per site but these patients are hard to find, and Peterson said that even his office was having trouble finding them.Australian Work - The Australians are also beginning to differentiate immunological markers in the severely ill from moderately ill and healthy controls.The Lipkin/Hornig CFI immune study Dr. Peterson and the Simmaron Research Foundation participated in suggested that longer duration patients - who are probably more likely to be severely ill - may suffer from immune exhaustion. That finding needs to be replicated but if its true immune enhancers may be more likely to help the more severely ill.