You are here: Simmaron ResearchDr. PetersonDr. Peterson Talks – On Severely Ill Chronic Fatigue Syndrome Patients

Dr. Peterson Talks – On Severely Ill Chronic Fatigue Syndrome Patients

November 23, 2015

(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.

Dr. Peterson

Dr. Peterson has been treated people with ME/CFS for over 30 years.

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.

Dessin,-Mike---emaciatedI 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.

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.)

exhaustion

If you become bed bound at some point are you less likely to get better?

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.

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”.

saline-chronic-fatigue-syndrome

Regular use of saline can be helpful. A study underway will tell us more about salines effect on ME/CFS.

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

IL01B

Dr. Peterson believes cytokine blockers could be helpful.

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.

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.

Simmaron Research | Give | Donate | Scientifically Redefining ME/CFS

Print Friendly

27 Comments

  • leelaplay

    November 24, 2015 at 12:32 am - Reply

    We’re so fortunate to have Dr Peterson. I have one question. This story says Dr Peterson recommends “aggressive physical therapy” for the severe. Is this a typo? Could you please look at this and either revise so correct, or explain what is meant by this.

    • Cort Johnson

      November 24, 2015 at 1:52 am - Reply

      Since I’m unclear what it means and since interpretations can vary I’m going to remove it. Dr. Peterson’s slide referred to “aggressive and appropriate physical therapy”.

      • leelaplay

        November 24, 2015 at 9:04 pm - Reply

        Thanks for deleting it.

    • Mary Schweitzer

      November 24, 2015 at 7:52 am - Reply

      As a long-term Peterson patient I can assure you that he does NOT recommend “aggressive physical therapy” – at least not with those of us who are severely ill. Not even after getting better with Ampligen – there’s ways to get stronger, but he does not push them. He has too much else he is doing. And if there is anybody who is aware of the ramifications of CPET results, it would be Dr. Peterson. In his talk he did mention appropriate physical therapy – meaning mostly stretching if you are not high-functioning. But he’s never sent me to physical therapy. I suppose he would if I asked.

      You have to understand that Peterson treats each patient very individually. How he does that, with an impossibly large patient group, is beyond me – but he does.

      • Cort Johnson

        November 24, 2015 at 5:02 pm - Reply

        Thanks Mary for relaying your personal experience. (With regard to the use of the word aggressive it was taken from one of his slides stating”Aggressive and appropriate physical therapy”.) Dr. Peterson is well known, as you note, for his ability to understand the situation his patients are in and respond appropriately.

        • Mary Schweitzer

          November 24, 2015 at 7:45 pm - Reply

          i suspect it should have read aggressive therapy (because he starts patients on IV saline and other treatments very early) and physical therapy (the stretches in the video, which another person could help you do).

          • leelaplay

            November 24, 2015 at 9:08 pm -

            Thanks for sharing your experience Mary. I would think he meant aggressive treatments, such as IV saline, antivrals and immune modulators, and appropriate physical therapy for level of severity, eg gentle stretches, physical manipulation by an physiotherapist, always making sure to not bring about PENE.

  • Sue

    November 24, 2015 at 1:12 am - Reply

    I second leelaplay’s comment. “Aggressive physical therapy” sets off alarm bells! Please clarify.

    • Cort Johnson

      November 24, 2015 at 2:12 am - Reply

      Dr. Peterson says “aggressive and appropriate physical therapy”. as opposed to “aggressive and unappropriate physical therapy”

      • Sue

        November 25, 2015 at 10:41 pm - Reply

        Thank you for the clarification, Cort. I have no doubt whatsoever of Dr Peterson’s clinical experience, those of us not new to the disease will have all heard of him. But I was thinking it’d be a very good piece to print off for my new GP (who thinks all I need is to do aerobic exercise, increase my heart rate (to dangerous levels for M.E) and do some hobbies) until I read that part, which stopped me in my tracks and made me change my mind, merely because he’d have picked that out specifically: It would have added fuel to HIS fire rather than being my own piece of ammunition! So many doctors choose to be blind – I’m ‘improving’ from ‘Whitney-Dafoe-level’ 0% ability and am now fluctuating around the 10 – 15% ability, still very severely affected – and the fool can’t see what’s right in front of him! We’re so stuck, those of us with M.E., it’s such a cruel disease and to top it we have to try to educate our own GPs/medical ‘professionals.’

  • Kristine Anderson

    November 24, 2015 at 4:00 am - Reply

    kandiapple.mac@gmail.com I am a patient of 29 years and keep getting worse. I am in bed most of the time. Are there any studies in SW Florida? I am also a writer/researcher on this and on chronic pain management. I believe that through my research I may have found that my illness is due to toxic mold and/or histoplasmosis. I need help and I am running out of money due to drug costs.

    • Lynn

      November 26, 2015 at 5:50 pm - Reply

      Dr. Nancy Klimas has a CFS clinic in Florida.

      • Kristine Anderson

        November 27, 2015 at 5:44 am - Reply

        Thank you, Lynn. I appreciate it so much.

  • happyru

    November 24, 2015 at 5:06 am - Reply

    He said such as stretching but certainly not a treadmill or cycling. I consider myself severe and no way could I even stand up 30 seconds. I do stretching but has not changed my severity in any way.

  • Dawn

    November 24, 2015 at 6:18 am - Reply

    ”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.”
    All these are standard in Addison’s disease , other causes of Adrenal Insufficiency which I have besides my ME/FM. Also the absorbing of nutrients requires energy and cortisol so we often need help with nutrition. Muscle wasting also, Addison’s. I have no idea what the relationship is between the illnesses but the extreme weakness and inablility to be out of bed has a lot to do with it too. When I had low iron and folate, b12, zinc and high copper and low cortisol/not properly treated, I couldn’t tolerate the humming of a washing machine in the next room, really quiet but gave me extreme symptoms. Low cortisol also gives you problems with light in many cases. So the treatment details outlined by the good doc apart from replacing my cortisol would be ideal for me. Both for my ME and my Addison’s we also need florinef if primary. With me I would choose him to treat my high inflammation. I am on LDN for my immune system it is good.
    I am better than I was but one of those who doesn’t bother with the doctor as getting out into the world is such a hard thing for me. I have had many years of this
    i am not in the US so cannot see this guy.
    Good luck all who can.

  • Nancy Blake

    November 24, 2015 at 2:07 pm - Reply

    Cort, I think it is extremely important for Peterson to clarify exactly what he means by ‘appropriate physical therapy’. I’ve been looking at the polio connection…exertion during the time when the virus is replicating resulted in a high probability of paralysis in the muscles used. A review of the effects of exercise on the immune system indicates many adverse effects as a result of extreme exercise…moderate exercise improves immune function, extreme exercise lowers it. We know that exertion harms many body systems in ME (see the IOM report). Les Simpsons work shows one of the reasons why our aerobic metabolism isn’t working (non-deformably erythrocytes), so that any muscular exertion almost immediately becomes anaerobic, so effectively becomes extreme…there is no such thing as ‘moderate’ exercise in ME. The accounts of many of the severely ill (constant intractable pain, spasms, paralyses) tell how they were moderately ill until they exercised, after which they became severely, permanently ill. It is notable in the patient account in the article that this person continued various forms of exercise throughout the earlier stages of his illness. If, as seems probable, we have a virus that replicates not just in muscle, but throughout our body, as a result of exertion, and in view of all these effects, we really need to know how any form of ‘physical therapy’ could be ‘appropriate’.

    • Cort Johnson

      November 24, 2015 at 4:59 pm - Reply

      I don’t know if we’re going to get Dr. Peterson to come on the blog. I don’t know but I assume he was referring to physical therapy to address the physical consequences of immobility which include shortened, contracted muscles which lead to joint problems.If you’ll read Mike Dessin’s story you see that his lungs collapsed when he tried to something so simple leaning up. That’s because his shallow breathing left part of his lungs unused and they deteriorated and collapsed so I would deep breathing exercises might be helpful. Staci Stevens – who knows of PEM very well – highly recommends them.

      Physical therapy does not mean exercise. It can and probably does involve a physical therapist manipulating the limbs of the person to relieve contractures so that they don’t experience more pain and suffering.

      Read more : http://www.ehow.com/info_8096268_effects-immobility-body-systems.html

    • Mary Schweitzer

      November 24, 2015 at 7:47 pm - Reply

      Did you watch the video? It’a clear what he meant in the video.

  • Liz

    November 24, 2015 at 7:57 pm - Reply

    Great story, Cort — Thank you!
    In reference to the CDC study:
    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.
    Is there a way for severely ill patients HERE to be in contact with them?

  • Gary Nelson Harper

    November 24, 2015 at 9:28 pm - Reply

    The mention of becoming intolerant to specific foods grabbed my attention. My wife recently treated me to an Old Fashioned Glazed donut. I had symptoms previously, but I dismissed them as being ant bites. (Thailand has some powerful ants). I ate the donut and my lips began to swell. It had happened before, so I didn’t over react, Until I saw my face in a web camera. I went into to full anaphylaxis and spent two days in the hospital. I do not have any scientific data to back my claim, but I am reasonably certain that soy flour and soy lecithin were the culprits. I tested a Toblerone chocolate candy(soy component) and immediately went into anaphylaxis again. Beware of Chocolate and Dunkin’ Donuts and anything Soy. The Epipen is your friend.

    I apologize for not staying on the topic of this article, but there were several topics that reminded me of problems I have “learned to live with”, and soy is one that is overwhelmingly dangerous in my case. Funny, severely ill persons who wear sunglasses in dark rooms and avoid seeking help from doctor’s offices…..I thought he was talking about me for a moment. Thank you for the article Cort. I’ll dig up some more money to keep the site going. This site is worth a 1,000 dollars in information.

    • Cort Johnson

      November 24, 2015 at 11:18 pm - Reply

      Thanks

      :) Old-fashioned glazed donuts used to be my favorite – ummmm those were good. Haven’t had one in decades :)

      It’s more hypersensitivity – for me it’s chemicals and some foods, for others it’s light or touch – whatever it is I think its a key part of these diseases. I wonder if peoples microglia are tuned in different ways and that could account for it?

  • Mike Dessin

    November 24, 2015 at 10:33 pm - Reply

    Looking back on when I was my sickest..any therapy would be near impossible as I was too sensitive to people being around me. Even harder was I could barely think..just the process of thinking was nearly impossible.

    So yes, it completely varies per persons disability as to what they can do. If you can find ways to keep the mind and body a bit stronger safely within your limits that’s the best way to go.

  • Mike Dessin

    November 25, 2015 at 12:08 am - Reply

    A very key point that ME patients need to understand is that we can condition our bodies like any other human. If you lift dumb bells every day your arm muscles will get bigger. If your well enough to run a mile everyday your stamina will increase.

    HOWEVER we cannot condition ourselves to make our disease better. No amount of exercise will help the disease process. Quite frankly it may make the disease worse at some point due to the stress on the nervous system.

    Most patients will get malaise and notice quicker fatigue of the muscles when exercising, at any point in the disease.

    Thats a clear sign to be extremely careful!

  • Katie

    November 25, 2015 at 7:15 pm - Reply

    My symptoms go up and down like a yo-yo. I became sick but it evolved slowly. Each Christmas I could tell I was worse as each year I progressed from a cane to walker to w/c. Then I improved a bit but was always in pain and exhausted, just the degree would go up and down. Three years ago I was bed-bound for a few months, drastically dropped weight down to 82 pounds, in the worst pain I could ever imagine, fainting when up. It was at this point I was diagnosed with ME/CFS and FM, before that it was FM.
    I changed my diet, no wheat, caffeine, sugar and many other intolerances which had been tested. I began taking supplements such as Ubiquinol, Acetyl-L-carnitine and others as well as protein (rice based, the best one is GI Sustain). I gained my weight back, also with the help of Olanzapine for a few months then too many s/e and I stopped.
    Since then I’m still up and down with my symptoms.
    I used to try and exercise as this was emphasized by my doctors at that time. I got worse and worse.
    I’m going to talk with my ME doctor and ask about IV saline infusions. I think that may help in my situation (have neurally mediated hypotension-is that the same as POTS? My heart rate also goes up)

    • Cort Johnson

      November 25, 2015 at 10:08 pm - Reply

      Thanks for sharing Katie. Congratulations on getting better. Neurally mediated hypotension refers to large drops in blood pressure; POTS refers to extremely fast heart beats upon standing. The heart beats so fast that there isn’t enough time for it to fill with blood and pump it out – hence the problems getting blood to the brain. I would guess that blood pressure might drop so perhaps NMH and POTS can occur in the same person (?). Others would know better than I.

      Good luck!

      • Katie

        November 26, 2015 at 8:30 pm - Reply

        Thanks Cort,

        Usually my heart rate goes up as my BP falls but not always. If it wasn’t for this blog I’d truly wonder about myself. Many symptoms are up and down and I often don’t know why. I’m sure it’s like that for many.

  • carmen Avalos

    January 15, 2016 at 10:38 pm - Reply

    Hello my name is carmen Im 44 year women from Modesto California with CFS diagnosed in 2010 Im very ill unable to work and in bed most of the time receiving SSI disability desperate looking for help is there a research organization that can help me with a treatment please help me! !
    My email is caravalos2011@hotmail.com.
    Thank you

  • Leave a Reply