Spoonie Radio Ep 10: Dr. Lucinda Bateman

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Dr. Bateman and I talk patient autonomy and 5 clinical pearls from years in practice: pacing, emotional resilience, sleep, pain, & treating comorbid conditions

FULL TEXT TRANSCRIPT:

Dr. Craig:     You're tuning in to Spoonie Radio I'm your host Dr. Courtney Craig. Today my guest is Dr. Lucinda Bateman. Dr. Bateman is Board Certified in internal medicine. She has published numerous important papers on the topics of ME/CFS and fibromyalgia and most recently participated in development of the Institute of Medicine report.

In 2000, Dr. Bateman opened the Fatigue Consultation Slinic in Salt Lake City Utah and has since evaluated and followed more than 1000 patients with chronic fatigue conditions. She has lectured extensively on issues related to chronic fatigue syndrome and fibromyalgia at various outlets and organizations. She's also the cofounder and a board member of OFFER – the Organization For Fatigue and Fibromyalgia Education and Research, with the goal to encourage a more thoughtful evaluation process, the sharing of information with patients and medical providers, and cooperative research efforts aimed at understanding the causes of ME/CFS and fibromyalgia--as well as developing treatments.

So welcome to the show Dr. Bateman!

Dr. Bateman:           Thank you.

Dr. Craig:     Okay. I want to start off by saying thank you for all the hard work that you put into developing the IOM report. It is really quite impressive.

Dr. Bateman:           Well thank you, it was hard work but a very good process for me.

Dr. Craig:     And I really believe this report is important for patients because now patients can have a sense of autonomy that I think wasn't there before. I hear frequently, and I know from my own experience being a patient, that there is often great hesitation in being open and honest to physicians about this diagnosis. Many, many times I either out and out lied that I had a chronic condition or concealed it from healthcare providers due to the fear of being stigmatized or fear of getting inappropriate treatment. So now with this report I think patients should feel free to be more open and honest about their diagnosis.

Dr. Bateman:           Yes, I agree.

Dr. Craig:     Yeah. We're going to have a collective coming together of patients and providers so we can actually manage symptoms.

Dr. Bateman:           Right. Well not everybody realizes that is the primary purpose of our work right? Is educate providers so that we have a common language and they know what to look for. Plus the stature of the IOM really helps the patients feel more confident talking about it.

Dr. Craig:     Yeah, absolutely that's the whole point and I really hope that that is what we get especially with all the work that you guys put in to it.

So the main focus of the interview today is I would like to ask you things that you've learned from all your years in practice. Now I believe last year you wrote an excellent blog series where you highlighted some clinical pearls that you would like to focus on with patients when you are formulating a treatment plan. And in no particular order you hit 5 important critical pearls. They are:

  1. Building emotional resilience
  2. Managing sleep
  3. Controlling pain
  4. Pacing
  5. Treating comorbid condition

So I kind of want to get into these 5 things a little bit more detail so again patients can have more information to communicate with their healthcare providers.

So of those 5 what have you found to be the most important piece?

Dr. Bateman:           Oh, that's a good question. I mean I think I picked these because they are things that were successful and also because they build a sense of control in the patient. We talked about that because this illness is so disempowering and creates a lot of hopelessness and fear. And having something A – that works and B – that you can do as a patient really gives you a better sense of control.

So in a way it's hard to prioritize them because it depends on how each individual patient is doing with each of these things already right? So what I try to do is create a hierarchy or priority list right away with the patient to have them know what they are doing well with and what things they could really still work on. So that would be how you determine the priority list.

Dr. Craig:     Okay. So one big priority for lots of patience is the idea of pacing. So how do you approach pacing with patients? There is such variability with patients' degree of disability and what they can do. So how do you work on developing a pacing strategy?

Dr. Bateman:           Well the first thing I do when I talk to patients--and I try to do it when they are a new patient if possible right at the beginning, and I try to do it with someone who knows them as present in the visit because that builds the support as well--and I like to pull up the gene expression research that I did with Alan and Kathy Light. And for those who aren't familiar with this, we induced post-exertional malaise with exercise and drew people's blood before and after the exercise to show that gene expression changes relative to post-exertional malaise. So that's a very visual picture. So first thing is I try to convince them that it is real, because even patients start feeling guilty about reducing activity. I think they know instinctively they should do it but they need to be committed to it actually as a medical intervention.

And then the next thing is to tell people that pacing is not the same thing as resting. It's a completely different thing. Pacing is learning how to stop short of inducing relapse, and it's a really delicate interplay with physical conditioning and probably the most important thing is that has to be individualized to the patient.

So I think that there's a lot of errors that get made; people don't do anything because the symptoms are horrible and they are afraid to induce them and some people are chronically inducing post-exertional malaise and living in very high symptom burden. So again it has to be individualized. And the goal is to be able to do as much as your symptoms permit without inducing post-exertional malaise.

So in my guidance to most people is not to have any consequences the next day from activities they do. And to try to just learn… I mean Spoons is the perfect analogy right? The Spoonie theory and the Spoons theory is to kind of understand what you have and then you are the one who decides how to divvy it out based on the things that you need to do that day.

Dr. Craig:     Right, right. I'm seeing that providers are being a little bit more scientific with this approach to pacing as well by using some self tracking tools that we have on the market. Things like FitBits and other sort of devices, so you know exactly because it's hard for the patient sometimes to know – what did I do yesterday? They have the brain fog as well that they don't even maybe remember that they over exerted themselves.

So is that something you see that patients have been trying to use now or that you've started to use?

Dr. Bateman:           Yes, I would like to be able to use that more and more, but I also think that people with this illness need to learn to pay attention to their body and to respect it because I think contrary to maybe some stereotyping that people with this illness are lazy or whatever--I think it is really the opposite; that sometimes people get in this place because they are determined to keep going and ignore the signals. So I really focus on a lot of feedback back and forth and paying attention and then yes, tools to remember and record can be very helpful.

Dr. Craig:     And that kind of ties into your next clinical pearl nicely this manifesting mindfulness in the patient--and both in the provider to being open and in tune with what the patient is saying--but your next clinical pearl is building emotional resilience. I really like this one. So what effects have you found that this emotional resilience plays in manifesting this illness, and the severity of this illness?

Dr. Bateman:           Wow. I mean honestly we have to choose our words carefully whenever we talk about this in the community because it's not about depression, it's not about a mood disorder, but is still so needed because this is an invisible stereotyped misunderstood illness that adds insult to injury, right? So right away people with this illness are prone to feeling a lot of despair and anxiety and all those things and dang, you just have to get tougher, right?

And it is so important to be able to self manage in the absence of definitive treatment that until you can get your feet on the ground and get centered you are not going to be able to do what you need to do. So that's one of the most important things is you've got to develop, in a very difficult situation that crushes you emotionally, some strength and resilience there through a lot of different ways.

The second thing is that this--not just ME, but also fibromyalgia meaning widespread pain--both of these conditions are probably centered in the central nervous system in the brain. So this is the ultimate mind-body interface, because neurologically and physiologically stressors come in to the hypothalamus in the brain and create sensation and thoughts and autonomic function and neuroendocrine function from the hypothalamus down. So it is actually a physiological intervention to be emotionally resilient, and to control how we deal with stress and to be in the driver seat. So for that reason also it is very, very important.

Dr. Craig:     Yeah, that's a great point. So what kind of interventions do you use to kind of harness and cultivate this in patients? Motivate them to achieve emotional resilience?

Dr. Bateman:           Yeah, it's hard. I mean I think creating a safe communication in the medical setting is really important so we can just talk frankly about how the illness is impacting people's lives and understandably there was a big wall built up between medicine and patients back when people--it probably still happens--but when there was a tendency to say, “Oh yeah just depressed, take an antidepressant." But you need to be able to say – How is this impacting you emotionally and how can we empower you and help you feel less vulnerable, and all those things roll together building emotional resilience.

And sometimes it means taking an antidepressant or seeing a therapist. So there is all gradations from self management up through what might be needed to restore you to a place, right? Where your old self again, where you feel a little bit more tough and able to deal with everything.

Dr. Craig:     It is so important to have a network not just with your provider but was also your caregiver, your family around you, to support you because it is not easy, not an easy area to address.

Dr. Bateman:           Yeah, I just want to add something that we used the turtle as our motto. I know that the turtle is used elsewhere, but that has been the mascot of us here with my patients because it is not just about pacing. It is also about being self-reliant. The turtle shell it protects and helps you feel more dependent, you have a safe place to be but then you've got to put your feet back out and walk.

Dr. Craig:     That's a great analogy, yeah. So it's going to take time for attitudes to change for sure. The IOM report is a step in the right direction but patients are still going to encounter resilience with physicians. They are not going to be supportive or they will continue to stigmatize the illness. So what advice would you give for patients who experience this with a physician?

There are so few CFS specialists still so we have to seek out other providers who may be not be so open. So what advise do you give to a patient who is having difficulty finding this type of supportive care?

Dr. Bateman:           Yeah, this is a challenge. I am going to divide it into more primary care specialties and more specific specialty. I guess primary care is a specialty but let's say more general and more specialty care. So from the standpoint of finding a primary care or a primary health care provider necessarily a physician, whoever is managing and coordinating your health. I usually tell people to do two things – one is to make an effort to train their doctor. Now that sounds funny but develop a relationship, educate them, give them a chance to learn from your experience. That's because it is kind of hard to find another… You know, it is not easy to find people so you are to try to train the one you have in a relationship first.

Plus you educating one person with your own illness and that's one thing people can do for the cause – is put a little investment in training one primary care provider, and that's number one. If you can do that, if that doesn't work, you need a new primary care doctor or primary care provider. I wouldn't stay with someone who you can't develop a relationship.

And I usually say they need to be available right? You need to be able to get in and see them. They need to be respectful and listening. They need to be able to have a professional interchange with you and they need to be medically capable and they need to be good, right? They don't have to understand illness to be a primary care doctor. They just have to have those things and that sets the stage for both of you to learn from the illness and if you can't do that then you need to find somebody else and just keep trying until you find someone. They don't have to have expertise they just have to have good qualities of a primary care provider the way it should be.

The second group of course is specialists and I usually say there is probably not enough energy in the world to convince the specialists about this illness, but they are not usually for this illness right? When you go to see a gastroenterologist or a pulmonologist or a neurologist…and I tell my patients, “Don't waste a lot of energy on a ME/CFS or Fibro, just go there for what they can give you which is you're asking them to see if you have another illness right? Or to document the aspects of that illness and you get them off track actually if you push the diagnosis they are uncomfortable with. So you go you use their expertise and then you come back and take what you can from it and then back. I usually say get in and get out for what's needed and don't get too fragmented in having too many specialists trying to manage the illness unless they are managing a comorbid condition.

Dr. Craig:     Yeah that's a great segue to your next clinical pearl – treating comorbid conditions. So many different conditions can kind of mimic the symptoms and the signs of ME/CFS as well as fibromyalgia. So what things have you found over the years to be the great imitators of this illness?

Dr. Bateman:           Well it is interesting because I will just come back to that term that's hard to say that comorbid conditions or comorbidities. We don't always use that term exactly the same but I will say that I like to clump comorbidities under two things. One is in this is that that present with similar symptoms and so they are part of the differential diagnosis so they may occur simultaneously and add symptom burden. Then the other thing I would consider, comorbidities are thing that grew out of the illness that developed because you have the illness. And they are kind of insidious and difficult. So if we just lump them together, probably the most important… Well there is a big list, right?

And actually I would refer people back to the ME/CFS Case Definitions because each evolving case definition tried to help providers by including these exclusions in the case definition which isn't really what the case definition is right? That's like the rest of medicine. The SEID criteria, the new IOM criteria, we decided not to try to make an exhaustive list of everything that can look like the illness; partly because we want to remind clinicians and put the responsibility back on them to take the time. But anyways you can learn about the comorbidities either from reading the Fukuda paper or lists in the Canadian Criteria and the International Consensus Criteria.

What I see really commonly are primary sleep disorders, like restless legs and movement disorders or central sleep apnea or obstructive sleep apnea. All along a spectrum of severity. We also see metabolic syndrome, which is sort of a pre-diabetic body type that really relates to diet and activity and the development of many severe medical problems down the road if it isn't addressed, and really can be addressed up front. If you have metabolic syndrome you can prevent a lot of weight gain and the problems if you understand it better and know what to do.

The next would be decisions like hormone replacement. This illness, because it occurs frequently in middle age, and it is at the time of perimenopause or when women are having a lot of hormonal issues or infertility or if they've had a hysterectomy or they are having bleeding. So decisions about hormone replacement in that transition and early menopause can really make a difference in managing symptoms because they are so overlapping and similar.

Nutritional deficiencies play a big role or they can play a big role. Lactose, gluten intolerance… everything that comes from weight gain and inactivity so there are of course there's a big differential. Every system, every specialty has illnesses that could present with fatigue and non-specific symptoms. Autoimmune diseases, precancerous conditions, things in the differential diagnosis. But I have listed the ones that are really commonly present.

Dr. Craig:     Yeah, and those are the ones I see frequently as well. And this could be really overwhelming right? You have a patient that comes in how do you know where to start with all of these different overlapping things going on?

Dr. Bateman:           Well, this is the beauty of treating comorbidities--is physicians already know how to diagnose most of them right? So even if they don't know about ME/CFS or SEID, fibro, or whichever one we're going to talk about in terms of subgroups, your primary care providers know how to rule out or treat and address other things.

It is hard to think about it and doctors don't cast a total net at the beginning. So even though we are a specialty clinic, this is all we do. We still have a step process. We kind of screen for the most common things first and then you gradually go down a path based on how people are doing and what symptoms are still up there.

So I think with primary care providers who aren't trained in the illness I would encourage patients to be informed about potential comorbidities and just take the question to their provider. And for some of that that's easy things you can just do a blood test for. But the things that don't have an easy blood test sometimes are things patients don't want to know about.

Like sometimes people avoid getting a sleep study because they don't want to have to deal with CPAP. For example, they don't want to know if they are metabolic, because they're going to have to cut out, change the diet.

But that's where taking responsibility plays a huge role and all the things on the pearls are things that are predominantly controllable by the person with the illness. It doesn't mean they are easy to control right? But they have the potential to have lots of control at the level of the person making the decisions every day.

Dr. Craig:     Right, definitely. You brought up sleep here. We talked about sleep apnea as a common comorbidity in this illness. So let's talk about that. That is your fourth clinical Pearl here on the list. So it is interesting, we don't know a lot about sleep in general, and we don't know a lot about sleep as it relates to this illness. So do you have any clues or insight on why this sleep apnea is so prevalent?

Dr. Bateman:           I have some ideas of course.… Well you are right, we don't know much about it but in terms of what we think we know in medicine we actually have a lot. We have specialists in sleep, we have studies, they study multiple systems during sleep, EEG, and your heart, and your breathing and all those things. So in a way it's the easiest place to start because we have an existing basic knowledge and medications and actually the non-prescribing aspects of medicine also are fairly developed in terms of therapists and people who can teach sleep hygiene.

So that doesn't mean it's easy and it doesn't mean we know everything. The IOM report was interesting for me. It was kind of revealing for me as we learned about the literature in sleep and that is that if you look historically at the research, I think there was a period when we thought the illness was all depression and then there was a period when we thought the illness was all undiscovered primary sleep disorder. So there is a lot or a lot of studies.

And what first… They go, “Oh yeah, see it is secondary sleep disorder." But as they did more studies and removed people with primary sleep disorders, we discovered that actually although there is a lot of primary sleep disorders that occur it isn't what the illness is. It is a comorbid condition. There is still a primary sleep disorder that we don't understand at all really with this illness. So there are two things to take away from that; one is everybody probably should be screened for primary sleep disorders because they are common but also to not feel bad if treating a primary sleep disorder doesn't fix everything. It is important it might help with some things.

The other thing about sleep is we have a lot of medications, but not just like FDA approved meds. We have herbs and supplements and lots of guidance about sleep hygiene and we have hypnotics that are approved for sleep. We have a lot of drugs that have a long history of safety with that we use maybe in low doses for sustaining sleep.

So we have to use a lot of tools. If you put CFS and sleep in Google, or ME/CFS or fibro, you can find lots of resources. And we have quite a few YouTube videos on our OFFER YouTube site and Solve CFS has videos, or a lot of references just about sleep if we dig in. I also think is probably second to pacing in terms of how it immediately affects the quality of life – to be able to approximate some kind of decent sleep. It's usually not great but it's better than leaving it wildly uncontrolled.

Dr. Craig:     Right, right I know that firsthand because sleep was a huge, huge issue for me and I notice now if I don't sleep as well, my symptoms return a bit. So it's such an important part of the whole healing process for sure. So do all of your patients receive sleep studies? Would you encourage everyone to receive a sleep study if they haven't had one?

Dr. Bateman:           Now in a perfect world--and I’m not speaking of us a member of the IOM committee because we do make recommendations about diagnostic studies or anything--as a clinician, in a perfect world I would love it if everybody had polysomnography. And not just once, sort of like a brain MRI. In 10 years you might need to look again to see if things are different, because your sleep architecture changes and drugs impact sleep. You can develop central sleep apnea from a lot of the drugs we use to treat symptoms. That's in a perfect world.

They are very expensive. I think we are starting to realize how important sleep is so there are alternatives to really expensive monitored polysomnography studies. A lot of times you can arrange home sleep studies that are like the sleep study but you do it in your home. But you know what, that's where technology has been the most help with FitBits and equivalent; I have mine on today. I showed you on the camera but we’re on the radio.

I use several partly for myself to guide exercise but also so I can learn but I think people can glean a lot of information about sleep wearing the monitoring devices.

Dr. Craig:     Yeah, that's something I do. I use an app called, “Sleep Cycle." And it has been a tremendous insight in terms of my sleep habits just snowing like what days of the week I sleep better than others and then I can correlate it with my activity level and my stress level on that day. So yeah, technology is a really excellent tool for learning more about sleep.

Dr. Bateman:           The thing about sleep is that is similar to pacing but you and only you control the aspects of sleep. Boy, if you don't work on your own sleep hygiene and pay attention to sleep, no one is going to be able to help you, that's core foundation.

Dr. Craig:     Definitely, definitely. Okay and pearl number five you have here is controlling pain. Now this might be more of a pearl for fibromyalgia patients because not every ME/CFS patient experiences pain. But what's your approach with pain and how can the patient kind of also empower themselves to control their own pain?

Dr. Bateman:           The reason is on the list of course is because again these are the things that we have more control over. It is not necessarily – well I do think they are important really for prognosis and managing illness but they are things that we have a lot more tools for. I call them the low hanging fruit, right. You should go right for the things that you have the ability to do the most about because that helps you in every way.

So there's two reasons why controlling pain is on the list. One is it's a part of post-exertional malaise in many people. So people who don't have pain as a core issue usually have pain when they have escalation of symptoms to some degree – achiness, headaches, tender lymph nodes. Pain is a sign of sickness in that setting. So recognizing pain and controlling it preventively is back to pacing. It is reducing the time the body is in relapse so the body heals better.

But the other aspect are the people that also have fibromyalgia and of course we like to divide and put people in groups but the truth is there is a huge number of people that meet criteria for both fibromyalgia and ME/CFS. And they are the sickest most severely impaired group by all the research; there is no doubt about that. So pain is adding much more debilitation to the syndrome.

The flipside is fibromyalgia research has had the jump on ME/CFS research. It's about a decade ahead in terms of recognition by science and the development of measuring tools and drugs, FDA approved drugs and the science. So everything we've learned from fibromyalgia research we can apply.

For patients who have ME/CFS and Fibro, it's the things we've learned from fibromyalgia research have to be applied gently, because people who meet both criteria are sicker and don't respond quite as well as the people who are studied with the more moderate type of illness that was just fibromyalgia. So lower doses, maybe everything won't work as well, but the tools and the ideas are still the same so we can borrow from that and start to improve how debilitating the pain can be. Combined with understanding that it's a part of post-exertional malaise in a lot of people.

Dr. Craig:     And one thing that you have written about as far as managing pain is the use of Low-Dose Naltrexone (LDN). That's one thing I get asked about a lot. So what is the reasoning for using LDN over maybe some of these other typical analgesics that are used for pain?

Dr. Bateman:           Okay, that's a good question. So the first point might be an important one to make and that is it's an either or question with LDN or opioids as analgesics. The principle of LDN--maybe it's possible people don't know this, it is an opioid receptor inhibitor or blocker. It blocks the effect of opioids particularly in higher doses. So if patients are taking opioids, they are not a candidate for low dose naltrexone if they are taking them chronically. Which is sad, right? Because it is really a promising treatment. So I think we are starting to not be so quick to put people on opioids, or even use them very much.

And I have people in that in between place who take them periodically. I am saying to them – this is hard right, if you rely on opioids as you are rescue medicine which is no problem right? Lots of people use low-dose intermittent opioids as a rescue medicine. You can't try LDN really because it takes two or three months for LDN to build its effect and if you are using opioids during that time, they sort of cancel each other out. Neither one works very well because opioids trigger the receptor and naltrexone inhibits or blocks the receptor.

So I think some people don't like the LDN in part because they are trying to combine the drugs. But it is hard to make commitment to not use your opioids for two or three months if you have relied on them. So that's the first point I want to make – is we haven't fully explored it and we have a whole bunch of people who might not have the option because they become opioid tolerant opioid dependent in an effort to manage their pain. So that's the first thing I wanted to say. And we think that low-dose naltrexone works. We're not sure.

I was going to refer people to Jared Younger's paper. There was a 2014 review published in Clinical Rheumatology--the 2014 review article is called, “The use of low-dose naltrexone as a novel anti-inflammatory treatment for chronic pain." It is a wonderful review of what we think it does and why we think it works but admittedly we don't know for sure. But in tiny doses naltrexone might have a paradoxical effect, and actually reduce pain instead of blocking opioid receptors.

We know that in some settings it increases the release of endorphins, your own natural endorphins but Dr. Younger has focused on the fact that he believes that it is an anti-inflammatory in the central nervous system. It calms the activation of glial cells, and glial cells are immune type cell in the central nervous system that are trying to react to injury and are probably releasing inflammatory molecules that then may cause damage particularly to pain neurons that are transmitting pain signals.

So we are not sure but I can tell you that in certain subsets of people; particularly those that meet the classic fibromyalgia presentation, it can be as good as the numbers in this paper. I've had people have a miraculous improvement and it can help other symptoms besides pain. The pain seems very linked with the fatigue and activity tolerance. And I have had a little more disappointing experience with my ME/CFS patients but if you are persistent, some of those patients start to feel like they have been able to do more. They say, “It hasn't been miraculous for my pain…" which isn't always classical fibromyalgia pain "… but you know what, I'm looking back and I have been gradually been able to do somewhat more" so I think it is promising.

Dr. Craig:     Yeah, I have been reading a lot about it being used in addition to pain for things like autoimmune conditions too. So it will be interesting to see some of these other effects other than pain control.

Dr. Bateman:           Yes, and I think we need long-term studies because we think, “Oh well, it's just a tiny dose." But that doesn't mean that it doesn't have downstream consequences.

On the other hand untreated illness has horrible downstream consequences. So what we need is probably placebo-controlled, long-term trial so we understand what it is we're getting into. But that's difficult because it's hard to get funding for those kind of trials and this is a generic drug. So we don't have a pharmaceutical company as of yet behind it trying to put the money into the trials that will give us a lot more information. I think we'll see more of that down the road.

Dr. Craig:     Great. Alright with the remaining time left I kind of want to talk about some future directions that you have planned for the rest of the year. One thing that I am really excited to see is you're active on Twitter. I think that's wonderful to have an ME/CFS specialist active in the social media community, because so many patients rely on social media and the Internet for information. So welcome to Twitter. I follow you a lot and I encourage everyone else to follow Dr. Bateman on Twitter (@LBatemanMD). But one thing I noticed that you put up on Twitter was a wish list of needs for patients with severe illness. So if you can talk more about that, and what you need, and how we can help.

Dr. Bateman:           Well actually, it relates to Twitter. The reason that I am going to pursue this project is; when the IOM report was ready to come out, because of that and also because we are starting a nonprofit center of excellence called the Bateman-Horne Center – so the combination of those two things I was advised to get on Twitter so I could communicate what was going on and be a voice for the IOM report and to let people know.

But when I got on Twitter it reminded me because I make a lot of the most severely ill people are online connecting that way. I connected with a lot of individuals and it just made me more aware of the people who are severely ill and don't have support and are isolated. And so I decided that I could maybe use my presence and their presence on social media to learn something.

And so I kind of spontaneously said, “Hey, talk to me about your needs." And then I got lots of wonderful, really helpful responses from people. I would like to continue to do that because severely ill are off the radar, they need to get back on the radar. And I am hoping that we can collect as much information as possible so we understand the problem. If you don't understand the problem and the barriers, and somehow put that on the radar of medicine, everything stays sequestered. So this is really an effort to learn and to maybe create a paper.

We formed a team of interested research students who are going to help me look at the literature, maybe communicate, and write a paper about what the needs of the severely ill are. I predict we're going to find a number of things. One is the patients could have done better, maybe not become so severely ill if they had access to resources. I also think we will find patients with untreated comorbid conditions. So I'm not just saying, I'm not just resources to doctors and grocery stores and all of these things and support, but also just regular medical care might have prevented some of that or is still available.

And beyond that I think we ought to be studying what that core illness is that makes people so ill and that leads right to better resources and better access for people who are severely ill, and maybe better communication. So my call is still out there for information. We want people to tell us what it's like and particularly, real concrete input about what the barriers are, what the needs are so that we can define it better and start to help.

Dr. Craig:     That's great, there’s such a need for that for sure and that's such a creative way to do that is using social media because yes, this is how we connect is virtually like we are right now. There's also a tremendous need for more specialists. So how do you see that resolving maybe with the IOM report or some of the changes that we've seen in the last five or six years.

Dr. Bateman:           You're talking more ME/CFS or SEID, specialists within the field?

Dr. Craig:     Right. How can we increase our numbers of specialist?

Dr. Bateman:           Well, this is the challenge and in the past, the barrier has been A- it’s unpopular and uncertain but also unfunded and risky. It's not just that people may have a stereotype about the patients and the illness, but it's a career risk to go into this – people who are in the field struggle and don't get support and they are stereotyped.

So as we move forward with the IOM report I think some of these things are going to go away. But still really good providers are far up the food chain of education, and it is hard to get people to leave their specialty or their stable employment or what it is they are doing to come work in the field. So I think we need to be targeting non-physicians and we've been – my PAs and I teach every year at the PA school and the nurse practitioner school here, the University of Utah – they always want physicians and people to come help teach lectures. They usually have a lower budget and they are really grateful for volunteers. So we've done that every year for many years actually of course on fibromyalgia and of course on ME/CFS.

I also think we need to target pre-med students and we've set out a net in the formation of the Bateman-Horne Clinic and we have 8 or 10 pre-med students. Premed students are required in their application to observe physicians, work with patients, do research and perform service and leadership and they are always looking for opportunities. So we went out and cast a net for pre-med students and I now have a bunch of pre-med students who would come in, observing, they are going to do research and it doesn't take long for them to sit in the patient visit and become one of the understanders of the illness.

So when we get that going, as we get the clinic going were going to try to residents and medical students to rotate through so that we impact people early in training before they encounter stereotypes and frustrations. This is going to be great but we need money to do this. I think people don't understand that the costs are high. OFFER, the nonprofit that's going to become the Bateman-Horne Center of Excellence, has in the past funded students to come rotate through the office – a stipend in the summer and we started to develop some people coming up to the system who are now insiders, they understand patients, they understand illness.

Dr. Craig:     A lot of optimism in general, for all things both with these clinical pearls and treatment directions and future directions and research for patients and you're up and coming specialists.

All right, last question Dr. Bateman. How can our listeners find out more about your work, research projects you're involved with or more about your clinic?

Dr. Bateman:           Well, we are on the edge of change. This very day is our day to start to change all the business paperwork over.

So my clinic and OFFER, which is the nonprofit, are emerging as the Bateman-Horne center of excellence so it is going to be a 501©(3) nonprofit. Until we have all of our website and our social media up, you can follow everything on OFFER. So the Organization For Fatigue and Fibromyalgia Education and Research has a website. It's www.OFFERUtah.org and there will be direction on that about what's happening with the center of excellence. You can find my website, the office website. We will try and have a presence on social media so that information is out there.

I also want to let people know that on YouTube there is an OFFER Utah site. There are hundreds of educational videos posted on YouTube so you have to dig in and get it to call it more but there is a lot of educational resources that might be helpful for people as OFFER has focused on education for the last 10-15 years. So we will try to bring all that together in the Bateman-Horne Center of Excellence with fundraising.

Our new director is a PhD in medical anthropology, who worked 20 years developing a nonprofit clinic for the homeless. So he gets working with a population that's been marginalized and he is super interested in how society could possibly have possibly done this and righting the wrongs. We are hoping our clinic will be a place that has equal access, that's our goal: is to have people of all – a bigger demographic group and people maybe who don't have insurance and maybe on Medicaid try to kind of correct the selection biases that have… that might have been in my clinic and other clinics. That's going to be our goal if we can get the funding.

Dr. Craig:     Thank you so much for sharing your clinical wisdom with us today and thanks for all the hard work. So you are really a champion for this community.

Dr. Bateman:           I am happy to do it and I am in for the long haul!

Dr. Craig:     Wonderful! Until we meet again, Spoonie Radio signing off.