In our latest “People in ME/CFS Research” spotlight, I was fortunate to visit Dr. Morris Papernik at his nearby clinic in Connecticut and interview him about his decades of clinical experience with ME/CFS patients. Dr. Papernik has been treating ME/CFS and Fibromyalgia patients for over thirty years, has served on the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and we are very excited about the prospect of collaborating with him soon here at Jackson Labs for the ME/CFS CRC project. Read on to learn more about his background, his methods for diagnosis and treatment, and his opinion of the ME/CFS field. 

Hi Morris, thanks so much for taking the time to meet with me! You’re a physician who has a special interest in treating patients with ME/CFS. Can you tell me a little bit about your medical background and how you became involved in treating this disease?

Hi, Courtney! Sure, so I went to med school out in Chicago at Rush Medical Center, and went to a residency program in internal medicine, and then I went into practice in 1985. And around that time was when there was an article published that I believe was written by Dan Peterson, William Bell, and Paul Cheney. They talked about an illness which they found interesting, where there was this devastating fatigue and outbreaks of it often occurred in clusters. It was interesting because at the same time, I had patients coming in with the same complaints, and after checking for a few different infections, I couldn’t figure out what was wrong with them. So I called Dan down in Lake Tahoe, and I asked him about it since I was noticing it in my own patients. Well before I knew it, lay-people were calling him, Bell, and Cheney and looking for answers as well, and so they started referring them to me because I was in the mid-west and they were in other locations. So I started seeing more and more of these people, and I was getting more and more interested in it.

Obviously at the beginning there was not much information available, but eventually the terminology evolved into Chronic Fatigue Syndrome. Pretty much by trial and error, I was trying different medications on people. Then I noticed that there was a lot of crossover between ME/CFS and Fibromyalgia, so I started seeing a lot of those patients as well. So I learned a lot more about these diseases, and became well-versed in a lot of the medications, such as anti-viral drugs and psychiatric drugs and the pharmacogenetics and pharmacology of how they worked. So I was becoming proficient at putting some of these drugs together and I was starting to see some success with these patients. There was nobody else in Chicago doing this, so I set up a sort of clinic for Fibromyalgia and ME/CFS back in the early 1990’s. Then I got involved with Hemispherx Pharmaceuticals, who was making Ampligen at that time. They were looking at HHV6 as a possible cause and some of my patients were in that study. It was fascinating, because obviously the patients were blinded but you could really tell who got the drug because the ones that got it were really doing better.

Then I was invited to be on the CFSAC in DC at the Department of Health & Human Services, and I served there for four years. And honestly, I was disillusioned with that committee. I was very hopeful that we could get all of these people together and really do something, and that we could really make an impact on this illness. Then I got there and realized that nothing works in government. It was interesting and insightful, but not much got accomplished. Cindy Bateman was on the committee at that time as well, and so was Anthony Komaroff, but it was unfortunate that not much got done. So then about ten years ago my kids moved out to New York, so we followed them and moved to Connecticut. And I realized nobody here knew anything about ME/CFS, and people didn’t really know how to treat Fibromyalgia either. So I started up doing that here, and now I see a lot of patients!

Wow, so you have been involved for quite awhile. What are the most important questions you address when diagnosing and treating your ME/CFS patients?

In terms of diagnosis, a lot of times, people will come in with the typical symptomatology that you see with ME/CFS or Fibromyalgia, but often there’s a cross between the two and it’s hard to differentiate. So I’ll ask all the questions for both diseases, which basically go into how long you’ve been fatigued, is it disabling, post-exertional malaise, headaches, sore throat, memory loss, concentration issues, and other things like that. And then, and my students laugh at me when I do this, but I ask, “if I was the genie in the bottle and I could make one thing better, what would it be?” If they say it’s fatigue, then maybe they fit more on the ME/CFS side, but if they say pain, then maybe they fit more on the Fibromyalgia side. But then I also need to do an exam. I still believe that the tender point exam for Fibromyalgia is very useful, because it tells you how much pain they’re in and if it’s significant. If they don’t feel any pain, but they have all the other symptoms, then they’re clearly someone with ME/CFS.

Even though there’s criteria for ME/CFS, the thing that’s always in the back of my mind is, am I missing something? As physicians, we have to take all the information and rule out everything else.  But you can lump things into categories, like neurological, autoimmune, infectious, vitamin or mineral deficiency, chronic disease like Diabetes, or significant psychiatric issues. I say significant because obviously you can still be depressed if you have ME/CFS, but it could be because of the disease so you have to make that distinction. Then we do all the bloodwork. And there are three things we don’t have blood tests for, and those are ME/CFS, Fibromyalgia, and depression. If they don’t have the pain component, then they’re not Fibromyalgia. Depression is the harder one to rule out, because a lot of ME/CFS patients do have depression. How can you not be depressed with this illness? So there’s primary depression where everything is fine but you’re still depressed, and there’s secondary depression because of an illness. Most of these people are secondarily depressed, and that’s not surprising. So then once I’m satisfied with the diagnosis, I say, let’s see what we can do to help. Also, I usually test my patients for Herpes viruses because they’re looking to get disability, and HHV6 will often come up positive in patients, which is ammunition I can use when I go to the disability board and I can say, “HHV6 is often found in ME/CFS,” and it helps them get approved for disability.

 It can be very difficult for patients to find physicians who are knowledgeable about how to diagnose and treat this disease. As a physician, why do you think that this is the case, and how can medical professionals become more proficient at treating these patients?

So, in the early days, I used to a do a lot of lecturing to physicians. But pretty much, I’ve found that established physicians are already jaded and have their own ideas. For example, I was giving a lecture once on Fibromyalgia and the audience members were saying it doesn’t exist. I said, “look at the data! There are functional MRI differences, there are spinal fluid differences. This is black and white data that shows these patients are not healthy,” and they say “well, I still feel that it’s psychological.” Sometimes, if you’re talking to an audience where their minds are already made up, even if you’re showing real data, they don’t really believe you for some reason. So many times, they see people like this and they just send them to me and don’t even bother treating them, which does the patient a disservice. It’s like, how do you make a diagnosis with migraine headaches? Where is the proof? There’s isn’t! No blood test, no MRI, just the patient history. So you can’t say ME/CFS is all in their heads, yet you believe in things like migraine headaches. There’s just different criteria to make a diagnosis with this disease. In the old days before we had ultrasounds, women would go to the doctor with chest pain, palpitations, breathing issues, and numbness, and doctors said, “this is a hysterical female, give her valium.” Then the ultrasound came around, and they found there’s an abnormality called mitral valve prolapse, which causes all of those symptoms. You treat the mitral valve prolapse, and the symptoms go away. Sometimes, the science hasn’t caught up yet, so you can’t just blow people off because you don’t have an answer yet. It’s very frustrating. Often, medical students are taught there’s a black and white answer, but in reality nothing is black and white. Unfortunately, doctors are stuck where if it’s not black and white, it doesn’t exist.

So I have medical students and residents in the office, and this is usually their first contact with these patients. They have been told that these people are psychiatric and this doesn’t exist as a disease, so when they come here and see people who actually have these problems, and see some patients be treated and get better, it’s an eye-opening experience for them. They realize what they heard in medical school is totally wrong. They leave here with a greater appreciation for these illnesses, and for illnesses that don’t have to have a black and white answer. So I’ve found that the better way to reach physicians is to expose more and more young physicians who haven’t been biased by medicine yet. So if you can get younger people who are more eager to learn, they have better appreciation and are less likely to blow people off.

That’s so true. Hopefully we will have some great young doctors who come into practice and really know how to treat this disease. So, what is your opinion on the current state of the ME/CFS field?

What frustrates me is that there are so many people grasping at straws, that they’ll believe anything that comes out. Take for example the XMRV work that was done. When it came out, I was on the CFSAC committee, and he presented his data, and I said “this looks fantastic, but how do I know this is real?” Everyone just bought into it, but I said “we have to replicate it and make sure it’s real. We have to wait because we’ve been down this road before where people thought they had the answer but then it was nothing.” And unfortunately that was the case. Also some of the paths that I’ve seen researchers go down have been somewhat frustrating. Some have looked at transfusing platelets or red blood cells, or using immune-modulating drugs, without enough data beforehand saying that it was going to work. There needs to be some rationale to the research, and some thinking about what really might be the answer.

And a lot of the basic science research is really interesting, but it’s not coming up with real answers on how to treat patients, so as a physician, how will it help me today? Plus, a lot of these studies have only like 6 people in them, which isn’t a study but an anecdote. So patients will come in and they’ve read these studies and so they’ll ask for these drugs, and it’s like, you can’t have these drugs. They’re really bad for you and we don’t have much evidence that they’ll help! In a nutshell, what frustrates me with the research is that it’s not specific enough and people are doing too many things without really thinking about it.

You recently became involved with the ME/CFS project at Jackson Labs, and will be serving on our Steering Committee. Can you tell me some of your ideas for potential collaborations between us?

So I read the article in the paper several years ago about when JAX opened. I was going to write a letter then, but then I got busy. Then recently I was talking with Carol Sirot, and she was mentioning people doing ME/CFS research, and I looked up Jackson Labs and saw that you guys got a grant for ME/CFS, so I contacted. What fascinates me about what you guys are doing, is about two years ago I started checking the immunoglobulins in patients and found a lot of these people had suppressed IgGs. So the immune studies you guys are doing are very interesting to me. I have treated patients with IgG infusions and they do feel better, which is great.

So in terms of collaboration, I have patients that I can send your way for research studies. Unfortunately they’ve been seen by me and treated by me, so they’ve taken medications and things which might make them good candidates for research. But, any new patients that I get I could send to you guys to get involved, like how Cindy Bateman does. Another thing I’ve thought about is moving my office closer to JAX. Right now, the ME/CSF and Fibromyalgia components of my practice are about 10% of what I do, so I could just focus 100% on those, and everybody from New England and New York could come here. About 10 years ago when I moved out here, I decided we need a ME/CFS and FM clinic here.  Unfortunately I’m part of a corporation, so I can’t just do what I want. It’s something to think about though.

That would definitely be awesome to have a local clinic for patients! Do you have anything else you want to add?

Yeah, one more thing. A lot of people ask me, “why do you see these people? Doesn’t it take a lot of time?” And it does, but the results are so gratifying that it’s worth it. Patients come in and you sit with them and really try to figure out what’s going on, and when you get it right, it’s a wonderful feeling. I ask my medical students and residents, “how long does the doctor listen to the patient?” And according to studies, the answer is 14 seconds. When you only listen for that long, you’re missing everything. If you listen to the patient long enough, they give you the diagnosis. I try to teach that to my students and residents. So for patients with ME/CFS and Fibromyalgia, you have got listen to them because if you don’t, you’re going miss it. Treating them and having them feeling better, that’s the reason you go to medicine. That’s what you’re there for!