Nurse Advocacy in the ME/CFS Community with Lisa Hall | ME/CFS Alert #113

Nurse Advocacy in the ME/CFS Community with Lisa Hall | ME/CFS Alert #113

Hi, I’m Llewellyn King, the host of ME/CFS Alert.
Today we’re going to be talking to Lisa Hall, who is a nurse — just retired from
nursing, has worked with patients, young patients and older patients. She came
to nursing via an interesting route. First, she was a masseuse.
She studied alternative medicine. She’s interested in what is called Integrative
Medicine, which is bringing together conventional medicine and unconventional
medicine. Is that a fair assumption, Lisa? -Yes, indeed. -And how did you get into all this?
-Well, I was I was doing energy medicine and massage, and I wanted to see- -What is energy medicine? -Well, energy medicine often comes from
Asia, and in those countries they have studied the way energy moves around in
the body, and find that, when energy’s stuck, usually you’re in trouble so how do we
get it moving again, and moving in a balanced way? So I was doing energy work
and massage, but I wanted to do the integration– I wanted to see the
integration of conventional medicine with alternative medicine. So I went back
to school and I got a degree Bachelor of Science in Nursing and became an RN, and
I started working in a conventional hospital for three years — this was in
Kansas — and we were trying to include alternative medicine in that healthcare
system, however we weren’t successful and my daughter had just had her baby in
Boston, and that was kind of like “hmm, maybe I should go to Massachusetts,” and I
did find a job in integrative medicine in Northampton, Massachusetts ,and I
worked there for 18 years. -And now you’ve retired, and you’ve bought yourself a new camper, and you’ve been traveling the country. But tell me, how did you get involved
with ME, and all of all of the world of ME,
its suffering, its frustration, and its terrible need for attention? -So, working
at the clinic where I was working, which was originally Northampton
Wellness Associates, it’s now called Northampton Integrative Medicine,
we did have patients who had ME. And, as with many patients who have this
condition, they maybe manage to get to the doctor’s office once in a blue moon
when they’re well enough, and then you don’t see them when they’re not. So
really getting involved, you know having that history with these patients, working
with them often by phone because they weren’t able to make it into the office,
I got more and more involved in it, and especially as the “Unrest” movie came out,
and the ME/CFS Massachusetts organization began doing a lot of advocacy
work. -“Unrest” is Jennifer Brea’s very compelling movie -Indeed -And the Massachusetts
organization, CFIDS — they’ve changed the name now to something else, but anyway,
it’s the old Massachusetts CFIDS, which has been a very, very active chapter. And
how many patients with ME did you work with? -Over the years, oh, I don’t know,
certainly 60, 70, maybe 100. – Were you able to help them? -Well, we, of course,
because there’s lack of research, and we don’t understand yet what is really the
underlying– what’s going on in the body with ME/CFS. So we were never able to
address it directly. However, there are many things you can do when someone is
tired. You can look at what’s going on with their thyroid function and their
other hormones. What’s their nutrition? Maybe their digestive system isn’t
working properly, they’re not getting decent nutrition. What’s their sleep like?
Maybe we can help their sleep. Do they have an infection? Which could be
tick-borne, it could be viral, it could be a number of things. And also, looking at
the orthostatic intolerance, and the low blood pressure, how that’s affects people.
So there are ways that we can, with herbs and supplements,
and also with prescription medications, support a lot of these different
conditions. And while that isn’t directly addressing the ME/CFS, it does help many
times incrementally. It can improve quality of life, it can improve someone’s
ability to function, which is very significant. -Did you become very devoted
just to ME/CFS in your practice? -Actually in that practice, we see
people with chronic illness of many, many different kinds. Certainly ME/CFS
has always been a strong element in our practice, but we also see people who have
tick-bourne illness, cancer, heart disease, severe allergies, chemical sensitivity.
And, of course, all those things tend to, you know, cross over. -What do you
say to somebody when they come to the practice, oh did you say, before your
retirement, when they came to the practice and they clearly had ME. What-
would you sit them down and say, “this is very serious and we can’t cure it, but can
help you?” Is that what you did and how did that go? -Right, and of course, it’s
it’s very difficult for anyone to accept a chronic illness diagnosis, and one of
the things that we could also offer is that we could write letters, work on
disability forms — that’s something I got some expertise in, I had previously been
a legal secretary so it was very natural for me to be able to put together a good
strong letter, draft it for the doctor to review, and I’m actually still doing that
one day a week remotely. So you know we could do that. The other thing that I
definitely think anyone who begins with that diagnosis needs to understand is
pacing and the post-exertional malaise, and the idea that if you try to push
yourself, which we’re all trained to do in this culture, you know, “push through it,
you can do it, you know you have to meet the deadline,” all those kinds of pushing —
you can’t do that if you have this condition, because you
can do yourself harm. You can even do yourself prominent harm.
-What was your advice to families — you must have been encountered families,
caregivers, and the terrible burden that ME imposes on them — what was your
advice to them? What was your counsel? -Well, I think that it’s very important to
understand that this is a chronic illness. In our culture, we don’t really
think in terms of chronic illness very well. Most of medicine is aimed at acute
illness, so people think “oh it’s going to get over in a period of time and then
we’ll be back to normal.” So anyone with the chronic illness has to get that
understanding. And also that a chronic illness is often a rollercoaster ride, so
there are periods of improvement followed by dips. Just because you’re
going down into a dip doesn’t mean you’re not actually, you know, making some
progress. It doesn’t mean that you’re always going to be down there, because
this is something that’s a terrible problem — if you start to make a little
bit of progress, and then you lose it, it can be devastating, but I think also it’s
really important for caregivers to realize, regardless of who they’re caring
for, but in particular people with ME, that they need to take care of
themselves as well, because you can only take as good care of the person you love
as you’re taking of yourself. If you’re in if you’re in tough shape because you
haven’t slept, because you haven’t eaten, because you haven’t taken care of your
own needs, you’re not going to be able to show up in good enough shape to take
care of the person you want to take care of. And I know this from my own
experience as a nurse. This has become my mantra as a nurse, is that I have to take
good enough care of myself to show up in good shape to take care of
my patients. -Some of your patients were children. -Yes.
-That must be particularly hard. -It is very hard, and it’s particularly hard, interestingly, one of
the windows when ME/CFS is most often- most often arises
is between the age of 10 and 15, so when this happens, it can often be a new
onset of something that has never happened before, and of course the
parents are frantic to try to figure out what’s going on, get help for their child,
and as well as negotiate the school system and all of the demands of that.
-How do you find the schools? -It varies enormously. There definitely
our school systems that understand a lot better, and they’re definitely our school
systems where they’re sure the child is malingering, that the child is lazy. I
have to say, I haven’t seen very many lazy kids generally. Kids generally are
pretty interested in life, in school or whatever’s going on for them, so if
they’re lying around in bed, there’s something wrong. But, you know, how do you
negotiate with the school system? -You got into medicine through massage. Is
massage helpful to patients with ME? -You know, I don’t know particularly of-
that it is. I would say that it depends a lot. In other words, for someone who is
bed-bound, it’s very important to keep the body moving, it’s very important to
keep circulation going. I can imagine where massage could be
tremendously helpful, and also relieving the stress of just lying in bed. -What was something fairly happy that you encountered in your practice?
-Well, I think that it’s very exciting, at this time, that there is
more understanding of ME/CFS, that there is more respect for it as a disease, that
the advocacy work is bringing it to the attention of doctors and nurses, and that
there is the opportunity for a lot more research and attention and understanding
of this. -We know there is a dearth of doctors
who treat ME. How about nurses? Is there a bridge there, between nurses
and doctors, if we train more nurses, would that be a bridge? -It surely would,
and I don’t know if you’re heading in this direction, but I worked with
Northeastern University School of Nursing, actually I think was the Allied
Health part of it- -That’s in Boston?
-In Boston, yes, and they worked with myself
and some other people knowledgeable, some patients and people knowledgeable about
ME/CFS, and we created a continuing education program, which is free, for
school nurses, so that- to help them understand ME/CFS, to help them identify,
“oh maybe this kid has this,” and also we created a an assessment sheet for the
nurses to use that describes the different diagnostic criteria, and also a tool for considering what accommodations might be appropriate for
children with this condition to help them be successful in school, whether
they just have to, you know, stop doing gym class, and maybe take a break in the
middle of the day and go lie down in the nurse’s station, and they can still go to
school, whether they need a tutor at home because they can’t make it to school, or
whether they’re so ill that they can’t do school at all. -We live in a time of
physician’s assistants, of nurses who do a lot of the work that was once done by
doctors. Should we seriously be looking at training nurses just in ME?
Should we have a specialty in ME, and should we persuade the nursing schools
to teach it?
-Well, definitely it needs to be taught in the nursing schools. Having
a specialty in ME, I don’t know whether that would be appropriate, but one of the
really big problems with ME in general is that it’s not taught well in the medical schools, and it’s not taught in the nursing schools, so you
know, I didn’t know about it until I had been working in the
clinic for a while and it was, it’s really only in the last maybe five years
that I’ve become aware of how devastating it is, because as I say, when you see the
patients they’re doing okay, well enough to get into the office. So when you’re
talking to them on the phone, you don’t know that they’re lying on their back in
bed and haven’t been able to get out of bed for a week. So it’s easy to not
understand the severity of it, and I think that definitely education of
nurses is really important. Education of school nurses is particularly
important because school nurses are often the ones who see a new medical
condition when it arises, so it, you know, they’re the ones who are seeing the kid
not being able to get to school, someone who was a great student can’t finish
their homework, the teachers are saying you know, “she was the star of my
trigonometry class and now she can’t do arithmetic,” you know? And so they may be
able to work with the tools in this and continuing education and send, then, the
parent to the pediatrician with those tools to help the pediatrician
understand that this is this is ME. -Did you have to visit any patients in
their homes?
-Uh, no, I’ve never done home visits. -Are there people in nursing who do that?
-Well, certainly, home health nurses do that. On the other hand, the way
that our crazy medical system is structured, in general, home health nurses
are only going into the home of a patient who needs specifically nursing
care — acute nursing care — so if, for instance, you have a diabetic wound that
needs to be dressed and you can’t make it into the doctor’s office, they’ll go
to your house. But someone who has a chronic condition, such as ME, probably
not going to get a home health nurse. -Lisa, having seen this from this very
interesting perspective, I mean, really committed to it, what would you like to
see change fairly quickly that can be changed?
-Well, definitely more awareness amongst medical professionals in general, and the general public as well, because the more that people are aware
of ME as a condition, the more likely that the person is going to get the kind
of attention from the doctor, from the nurse, that they need. And I think that– so
you know, education of doctors and of nurses.
And this was the great thing about what they were doing at Northeastern, is that
they have this allied health system, where they have both medical students,
occupational therapy, physical therapy, and nursing students working together on
some of their coursework, so that they see how to work as a team. So all of
those professionals could potentially be working with someone who’s bed-bound
could be very helpful. So that, I think, is the most important thing, and that’s
something that is pretty available. That doesn’t isn’t going to require enormous
funding, for instance.
-Do you find resistance in nursing schools, the way
there is some resistance in medical schools, to including in the curriculum
this new disease or this underreported misunderstood disease?
-Well I think that there is some resistance– there’s always resistance to the new
thing. It was very interesting, for instance, I went to an event that was
organized by Mass CFIDS where we were talking to the Mass Rehab Commission, and they do different things. They work with people who are disabled to help them get
some education, maybe try to find some way for them to be employed. They also,
there’s a division of Mass Rehab that does the first two rounds of disability
determinations for people who are applying for Social Security disability.
Those folks had no clue. They had never heard of ME/CFS, or barely,
and they didn’t understand the severity of it, and they were routinely
turning people down for disability services because they didn’t understand
how bad this would be. So for them to see some of the “Unrest” movie, for them to
talk to families, family members who had experienced ME, was really revealing,
you know. And this is something that needs to happen.
-And now that you’re retired — not totally retired — because you clearly have way too much compassion and too much
passion and too much interest — how do people reach you should they want to
reach you? -So my email, I do have an email — actually the best way to reach me
would probably still be through the office which is Northampton Integrative
Medicine. My extension is 205. The phone number is for (413) 584-7787. And you can leave a voicemail for me there, or you
probably could just talk to them and say “hey can I leave a message for Lisa?” and they would do it.
-Have you lectured in any schools? -I haven’t, actually. We did, as I said, we did
do a an event, which I participated in and did some some of the lecturing for,
the Northeastern Allied services, and I believe there were 600 students in that
that room, so that was pretty exciting. But I haven’t, for instance, gone to any
nursing schools and talked about it, which actually is a great idea.
-One of the things which comes up is that- how many of the young people were athletes?
-Right. -They were ahead — my co-host in this program, Debra Waroff, was a great squash player, bicyclist, etc. before she was afflicted. Do you see a relationship between that
athleticism and the initial infection? -You know it’s really hard to say. I certainly
agree that there are many very athletic kids who suddenly can’t do it, and
this is so interesting, because for a long time, it used to be thought that
ME was actually just physical deconditioning, and if you just slowly,
slowly worked your way through building your strength, you could get
better, which turned out not to be true. But it’s very clear, when you have an
athlete who was at the peak of physical ability, who could run for miles, who you
know was just super physical condition, and suddenly is unable to do, to walk
across the room, you know, that’s not deconditioning. There’s something else
going on there, and so I think that it’s very clear especially with the athletes
that they’ve gotten some other condition -Lisa, it’s wonderful to have you on
the broadcast, and don’t be too retired. People need you. Thank you so much.
-Thank you. -All the best.

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About the Author: John Markowski


  1. Thank you. The really important point was made that on the days ME sufferers visit a doctor’s office, they can often look completely fine, and give a completely wrong impression of this illness to the doctor. Behind the facade, people are suffering greatly.

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