Cort Johnson: Making ME/CFS Research Readable and Accessible

A profile of Cort Johnson – part of a series highlighting the accomplishments of ME/CFS Fair Name Implementation Committee (FNIC) members

Cort Johnson is an ME/CFS patient and noted research reporter who has put his scientific knowledge to work on behalf of others who also suffer with this debilitating illness. He is the founder of the Web site Phoenix Rising: A Guide to ME/CFS ( and publisher of the bi-monthly Phoenix Rising Newsletter.

In 1979 Cort Johnson was 20 years old and an enthusiastic student at the University of California at Santa Cruz. He particularly enjoyed his daily runs through the beautiful redwood forest surrounding the campus. The first signs of ME/CFS came on gradually as he began to notice an aching pain in his thighs.

Cort described what followed. “Over the next six months, I got more and more fatigued; my legs felt leaden; the muscles all over my body hurt; it seemed like the blood was pooling in my legs; I had a constant desire to lie down. My performance in classes, while still good, was declining. Talking to people, for some reason, was particularly exhausting. The intense connection with nature I’d felt completely disappeared.”

By the time a year had passed, Cort had changed from a healthy, athletic young man to a person who could not even walk around the block without being in pain. He said, “I felt like I was wrapped in a strange cocoon of pain and fatigue.”

Although he had to drop out of college at the end of that year, by 1985 Cort felt a little better and was able to return to school and work part-time. It wasn’t easy with the fluctuations in his health, but eventually he graduated with a BA in Philosophy and later went on to earn an MS in Environmental Studies.

Multiple Chemical Sensitivities (MCS)

Over a 15-year period, Cort tried a number of treatments and therapies with varying degrees of success. Many worked for a while then suddenly stopped working or began making him worse. Ironically, it was while he was in the midst of what seemed to be a real breakthrough that he developed MCS. Not only did his ME/CFS breakthrough disappear, but he was also left with an ever-increasing sensitivity to chemicals.

Trying to make some sense of this new development, Cort theorizes, “When you look at brain studies, you see that ME/CFS patients typically need to use more parts of the brain than usual to accomplish the same tasks. Also, we don’t seem to recruit the normal number of muscle fibers when we exercise. I don’t know what happened, but I wonder if I somehow forged a stronger connection to the part of the brain that governs muscle activity and, in a system with limited resources, it left me vulnerable elsewhere. Like so much with ME/CFS, this episode was bizarre and is a mystery.”

Unfortunately, this mystery has seriously affected Cort’s quality of life. Highly sensitive to the myriad of odors and chemicals found indoors, he spends much of his time outdoors. He even has to sleep outside, which is not an easy task since he has to find areas free of fertilizers, molds and other toxins so often found in the air near cities. Being in cars also made him sick, so he bought a van and stripped it to the metal to remove all the synthetic materials. But despite all of these challenges, Cort has managed to find a way to bring help and encouragement to thousands of other ME/CFS patients.

Phoenix Rising

Today Cort maintains a Web site and publishes a newsletter – both called Phoenix Rising – dedicated to building a coherent view of ME/CFS and the research being devoted to it. He told the story of how Phoenix Rising came to be. “Once I had to stop working, I had time on my hands and learning about ME/CFS was an obvious step for me. I had always tried to learn about it before, but since there were few really organized sources of information on ME/CFS research on the Web, it was really hit and miss. My schooling had acquainted me with scientific literature of another sort, so I wasn’t really fazed by the idea of reading research papers. I also felt it was important to maintain some sort of ‘work’- to give myself some sort of ‘job’ to do.

“My uncle introduced me to the idea of a Web site, and the idea of sharing information on ME/CFS made the project much more exciting for me. The main focus of the site now is the Phoenix Rising newsletter, which provides a review of the month’s research in as readable a fashion as I can devise. If I’m careful about my exercise and watch my sensitivities, I can do a lot of mental work. In the end, doing the Web site has been a source of energy for me.”

It was also Cort’s uncle who gave him the idea for the name of his Web site and newsletter. Phoenix Rising refers to the mythical Phoenix bird that rises rejuvenated from the ashes of its destruction – something he feels all ME/CFS patients aspire to.

Cort is slowly reformatting his Web site. Once the redesign is done, he plans to add a comprehensive treatment section. “I hope to make Phoenix Rising a place people will think of when they want accurate information on ME/CFS treatments,” he said.

Promising Areas of Research

The central nervous system (CNS) and the vascular system are two areas of ME/CFS research that Cort thinks show a lot of promise. He explained, “Central nervous system research has been appealing in terms of its consistency. The recent CNS research studies almost always seem to have positive results, which suggests this is a core area in ME/CFS. Indeed it’s hard to imagine, given all the bizarre symptoms in ME/CFS, that the CNS is not involved.

“Not as much research has been done on the vascular system but I just have a gut feeling that it’s heavily involved. I think low blood volume and low blood flows to the tissues perhaps work together in the brain to mess things up. Since the autonomic nervous system controls both blood flows and, from what I’ve read, blood volume, the two could be intimately connected. (The July/August 2007 issue of Phoenix Rising focuses on the autonomic nervous system and ME/CFS.)”

Cort also finds gene expression an interesting research topic and is hopeful that an upcoming study will reveal a lot about how effective gene expression will be in helping to understand ME/CFS. Finally, he mentioned two additional research areas he finds intriguing: the herpesvirus and the enterovirus. He said, “A lot of ME/CFS patients intuitively feel that infections play a role in their disease but infection was more and more becoming a dead horse in the research field (the NIH won’t even touch it); but all of a sudden it’s back with a bang!”

Summing up his thoughts on research, Cort said, “I’m much more optimistic about ME/CFS research than I used to be. Some areas are starting to come together, not just in ME/CFS, but in other diseases where fatigue and cognitive problems are particularly troublesome. That researchers in ME/CFS and these other diseases are finding similar results is very exciting to me. Not only does it indicate they are on the right track, but it should help us continue to legitimize ME/CFS.”

Hindrances to Adequate Research

Cort believes there are two main problems hindering adequate research, one of which leads to the other. He said, “An NIH official actually admitted to our federal advisory committee, the CFSAC, that the NIH is still ‘not convinced of the importance of the fight.’ That’s a pretty amazing statement given all the studies and statistics on ME/CFS, but he must be right. It’s the only way to explain how such a vast research institution can spend such niggardly amounts on ME/CFS. Despite all the studies and all the statistics, the officials at the NIH don’t believe that it’s an important disease.”

He continued, “That leads to the second problem – a lack of opportunity. ME/CFS is a difficult disease to study; there’s no doubt about it. There have been a lot of dead ends in ME/CFS research. If a researcher feels brave enough to get by those problems, he/she still has to deal with a negative cultural mindset. In order for researchers to get into this field they have to feel there’s enough opportunity to balance the risk it entails. In particular, they have to feel that the government is willing to put forth a commitment equal to theirs. This hasn’t happened. In the last five years the NIH has actually significantly backed away from supporting ME/CFS.”

Despite this grim picture, Cort sees hope. “There are signs that if the government would get its act together, there is substantial interest in the field,” he stated. “The solution to this problem, then, may be more political than scientific. If officials ignore the evidence that ME/CFS is a serious problem in the U.S., then we have to get the people who sign their checks – in this case the Congress – to force them to act. That’s the only way I see that we have a chance for significant change – and we need really significant change. I think the CFIDS Association’s hiring of a Scientific Director who can reach out to ME/CFS researchers, our federal research institutions and our federal representatives could be very helpful in this regard. I think it’s a great idea.”

He went on to explain, “We’re not asking for something the NIH couldn’t easily do if it wanted to. We’re not talking about a lot of money. The kind of money we’re asking for now is really chump change to the NIH. Major diseases typically have budgets in the hundreds of millions of dollars. Projected spending for ME/CFS in 2008 is four million dollars. A ten million dollar increase would nearly triple NIH spending on CFS.”

Significance of the Name Change

Cort expressed his thoughts on the importance of changing the name of CFS. “I’m always focused on research and I think we need to do whatever we can to get the research community on board. There’s a lot of good research on ME/CFS now and a lot of alarming statistics by reputable research groups that indicate ME/CFS is a big problem, yet the big research institutions are still sitting on their hands. This indicates there’s something other than science holding us back – one of the things is surely the name. I imagine the negative connotations of Chronic Fatigue Syndrome have, over time, set like concrete in the ivory towers of the NIH and elsewhere.

“Tacking that ME in front of CFS will begin to redirect attention away from ‘chronic fatigue’ with all its terrible connotations and toward the central nervous and immune systems where it belongs. Some may think ME/CFS is too incremental, that what we need is an entirely new name. But I think putting the ME in front of CFS would be a huge change for researchers. They are very precise with their wording. Getting them on board (Rich Carson already has gotten some) could lead to a re-orientation in how ME/CFS is perceived. It’ll take time, that’s for sure, but it could pay off big time.

“I don’t want to give the impression that simply changing the name is a cure all. It certainly isn’t. But changing the name helps to fix a considerable stumbling block – something that ME/CFS, with all its other difficulties, shouldn’t be burdened with.”

When asked if he thought this effort at changing the name has a reasonable chance of success given past unsuccessful attempts, Cort replied, “We may have gotten ahead of ourselves with the last try – ‘neuroendocrineimmune syndrome.’ In hindsight, it was probably too large of a change. This name solves some of the problems that kept the CFSAC [the NIH’s Chronic Fatigue Syndrome Advisory Committee] from endorsing the last name change. Retaining CFS, in particular, provides continuity in the research and governmental fields that is very much needed. The IACFS’s decision to add ME to their name (IACFS/ME) and Rich’s ability to garner support from a wide array of ME/CFS professionals indicates that the name change’s time has come. I believe some of the past CFSAC members are also on board with this name change effort.”

Regarding the “encephalopathy” vs. “encephalomyelitis” controversy, Cort said, “This field is still evolving. We should never ever try to cover up ambiguity with certainty. That only sets us up for a fall later on. We know the brain is important in this disease, but since we haven’t pinned down where the problem is, it’s best to leave us some room to fill in the blanks later. Given our luck, we could decide on encephalomyelitis and find out that inflammation is not the central problem. Myalgic encephalopathy points to a key area in the disease and is scientific sounding, while CFS has all the pull in the scientific and government communities. At this point in time I can’t imagine any other name than ME/CFS for this disease.”

Finally, Cort shared his hopes for the name-change effort. “It’ll be a big win for the ME/CFS community if we can get together on this – something we really need! Lots of people participating will send a message to Washington and elsewhere that we’re serious and a force to be reckoned with. I think we probably lost some people after the last name change effort failed. Hopefully they’ll be back on board for this one. In so many ways we need to come together as a group and exert change. This would be a great way to do it.”

(Note: Cort recently hosted an Expert Q&A in the Community Chat Room. To read the scipt of his Q&A, click here.)


* Karen Lee Richards is the Lead Expert, specializing in Fibromyalgia and ME/CFS, for HealthCentral’s ChronicPainConnection ( Karen is co-founder of the National Fibromyalgia Association (NFA) and was Executive Editor of Fibromyalgia AWARE magazine for four years.

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