Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

A Personal Journey Into Lyme Disease

by Terri Reiser

(Editor's note: In this 2009 article, Terri shares her journey from a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to a diagnosis of Lyme disease. An interview with her Lyme disease specialist follows.)

About nine years ago I began to experience symptoms that I now know fit the profile for Lyme disease. I was working and living in Germany and had been for several years. I lived in a rural area and spent a lot of time outside hiking and walking my dog. I had a very stressful job and just thought that the symptoms I had were due to stress.

I was constantly feeling as if I had the flu. I would run low-grade temperatures, and by the last year I was there I had profound fatigue, frequent headaches, severe panic attacks and what I now know is Bell's palsy. My husband and I also went through several miscarriages.

By the time I had resigned my position, I could barely make arrangements to fly home to Florida. I was also soon pregnant with my daughter. (A year after she was born, I found myself divorced.) I thought that a climate change would solve some of the stressful problems that I had. My daughter and I moved up here to Cape Cod, where we have been for the past 7 years. I was lucky to find a terrific family physician, Dr. Barry Conant. I did not know that he and his family nurse practitioner, Beth McGarry, would become so important to my little family.

Over the course of the next few years I continued to experience more and more symptoms of fatigue, joint and knee pain, and headaches. I did have sinus surgery for sinus disease and a deviated septum that was expected to cure the problem. It has helped my sinuses, but my other symptoms got worse after the surgery. I never really recovered from it and became very ill.

My fatigue was overwhelming. I began the usual regimen of cures—yeast-free diet, mega-vitamin therapy, increased salt, more rest, more exercise, less exercise, melatonin. You all know the hoops we jump through.

I was tested right away for Lyme disease. In fact, I was tested throughout the next several years a total of 7 times. All the tests were for Lyme titers, and all were negative. Three different physicians diagnosed me with CFIDS/ME. I also was continuing to suffer from sinus infections and began to notice that when I was put on a regimen of Zithromax or Doxycycline or Biaxin, that by the end often in fourteen days, I felt better. The fog lifted. After several cycles of this, my doctor continued to keep me on Biaxin.

During the following year, I continued to slowly improve. I never told my doctor how bad my symptoms actually had been. I was just too afraid. I had such intense weakness and muscle spasms that I would fall down. One of the most frightening events was during a time when I had gone off medication. I pulled a hot frying pan out of the oven with my bare hands, warned my daughter not to touch it, and then moved it to the back burner. I did not feel the burn.

I then resumed taking Biaxin, and soon improved, only to have to go off of it for some other treatment. I hit bottom quickly. Within five days I was unable to get out of bed, I was unaware of being awake or asleep, and I had hallucinations.

I called my doctor, who put me back on the Biaxin and told me he thought I had Lyme disease. I could not believe that I did, as I had never pulled a tick off of me or had a bull's-eye rash. I did not know that the symptoms I was experiencing were those of Lyme disease.

I was then referred to a Lyme disease specialist, Dr. Donta, and he ordered a Western-blot test and brain SPECT. Before the results were in, which were overwhelmingly positive, Dr. Donta made a clinical diagnosis of Lyme disease and added Plaquenil to the Biaxin. At that point I experienced what is called a Jarisch-Herxheimer reaction, when you feel worse before you get better.

I was then in bed for two weeks in a lot of pain, but woke up one day and felt great for the next three weeks. I was able to travel to Florida and I was even able to do most of the driving. After a hike, my daughter and I each picked off five or six deer ticks off our clothing.

By this time I was well aware that spraying with a good tick spray containing DEET is essential, along with other protective measures to repel ticks. I now have tick spray available wherever we go. I make sure our cat is treated to prevent ticks being brought into the home and also so he won't get Lyme disease.

After a few months of treatment, I began to feel much better and kept getting better. During this time I realized that my daughter had been complaining of knee pain, and light sensitivity, was sick with sinus infections and sore throats, and was emotionally unable to handle much stress. During our first few years on the Cape there had been several deer ticks removed from her and she was given a prophylactic course of antibiotics.

We now know that this short treatment is usually not going to take care of Lyme disease. She is now under longer-term treatment for Lyme disease and is doing much better with a reduced school day, compliance in taking her medications, and more rest.

I continued the antibiotic and Plaquenil therapy for a year, at which time some symptoms that had disappeared returned. I did not experience the usual cyclical improvement and worsening of symptoms. At this point Dr. Donta changed my medication to tetracycline and I experienced another Herxheimer reaction that lasted about six weeks. Again, I woke up a few Saturdays ago and have felt pretty good since then.

I had to make changes in my lifestyle when I became ill and have had to continue to make changes. I know what I can do, how much of it I can do, and I work with a therapist to deal with illness-management issues. I am now a member of the human race again, but not the superwoman I was many years ago.

With that change has come a great understanding and appreciation for people with CFIDS/ME, Lyme disease, Fibromyalgia (FM), and brain injuries and infections. We all share so many of the same symptoms. We all have to go through such a trial, and we have no dream team to represent us. If we are lucky, we find a physician who takes the time to become "Lyme literate." Such was the good fortune that I have had.

I thought it would be a good idea for people with CFIDS to have correct and accurate testing done for Lyme disease, so I interviewed Dr. Donta (see interview below). If you have not had a Western-blot test done, you should.

Keep an open mind, use the resources listed, and go for one more test. I had almost every single symptom of CFIDS/ME that I ever read or heard about, yet I found out I have Lyme disease.

P.S. I wish all of us good luck in our treatments and in our outlook for the future. I believe there is a specialness about us beyond our illnesses, and we have to discover what that is and hang on tight to it. Whether it is your talent, your parenting, your faith or your ability to help another, use that to hang on. When I hit bottom again, and I will, I will read this paragraph, and hope that this information will help someone. I want to thank my healthcare professionals and their staff for all of their help, time and patience not only for myself, but for all of us with these particular health issues.

For further information contact:

Lyme disease Foundation

1 Financial Plaza, 18th Floor

Hartford, CT 06103

Phone: 860-525-2000

Fax: 860-252-TICK

National Hotline: 800-886-LYME


 

Interview by Terri Reiser with Sam T. Donta, M.D.

(Infectious Diseases and Biomolecular Medicine, Boston University Medical Center Professor of Medicine, Boston University School of Medicine)

Q: Dr. Donta, would you please tell about your creden­tials and describe your interest and work with Lyme dis­ease?

A: I have been an infectious-disease specialist for about thirty years now. I was head of infectious disease at the University of Iowa and at the University of Connecticut. I moved here for geographical reasons and continued my work in infectious diseases, including Lyme disease. We have been investigating toxins and the bacteria of Lyme disease. We have a toxin that we have isolated now that we're interested to see if it has anything to do with Lyme disease. I believe that if we can bring together our basic research with our clinical research that maybe we can advance the field significantly further.

Q: What tests do you rely on to make a diagnosis and what other factors do you consider in making a diagno­sis?

A: Lyme disease is still largely a clinical diagnosis that depends on a complex of symptoms, the most major of which are fatigue, musculoskeletal symptoms such as pains, shooting pains, joint pains, muscle pains and other, what I call, pure neurological symptoms and signs such as numbness, tingling, memory dysfunction, forgetfulness, mood disorders and a number of other neurological signs such as headache. Additional symp­toms can include palpitations, skipping heartbeats, rapid heartbeats, dizziness, eye blurring, ear ringing or humming, urinary frequency, and irritable bowel. There is a whole complex of symptoms that by themselves don't give you much of a clue, but when you put them all together are diagnostic.

Now, one of the problems is that this group of symptoms can be interpreted to be due to other diseases that I call "Lyme-like" diseases such as fibromyalgia, Chronic Fatigue Syndrome and, if you served in the Per­sian Gulf, Gulf War illness which is an identical multi-­symptom illness. I think that the exciting and interest­ing thing is that we are faced with a group of disorders now that have similar symptoms and they should be telling us something about what is going on. If we can only get past the credibility issue and move to figuring out why patients have these illnesses then we would all be better off.

Q: Which labs do you recommend that patients ask their doctors to send blood work to for determination of Lyme disease?

A: Regarding Lyme disease, the best test available now is the Lyme Western-blot, though it is an indirect test. It is one in which you use two different antibod­ies, that is the IgM antibody as well as the IgG anti­body, to look for reactions. This technique basically spreads out the proteins of the bacteria so that you can see individual reactions by your immune system against these bacterial proteins. Some reactions are highly spe­cific for Lyme disease, that is we don't think anything else can cause that, and it tells us that you have been exposed to and infected by the Lyme bacteria. Other reactions may be common to other bacteria and you cannot use that to say that you do or you don't have Lyme disease. The CDC recommendation is to have a two-tiered system of testing where you just do a titer (Lyme titer blood test) and then you follow it with a Western-blot only if the titer is positive. This unfortu­nately was a very poor decision and is inaccurate be­cause the titer test is negative in over 70 % of cases, in my experience, which have a positive Western ­blot test. The Western-blot still misses 20% of peo­pie who have Lyme disease. There is no other way, there is no culture method that is 100% reliable and the PCR-DNA method is just not sensitive enough, proba­bly because these bacteria are hiding inside cells and they are not destroying those cells and coming out into the open. So between the Western-blot, and the PCR-DNA testing, which is not very sensitive, we don't have many good laboratory tools.

There is a brain SPECT scan that I have been us­ing to see if there were changes typical of Lyme dis­ease, which is to the temporal lobe and the frontal lobe, although it can be to other areas as well. As far as that specificity, you can't use that to say, "That proves it's Lyme." It is like anything else in law and medicine, there is circumstantial evidence. So even with a positive Western-blot, that does not prove that your symptoms are actually due to Lyme disease, but it's compatible with it. When the Western-blot is positive in chronic disease, frequently it is the IgM that is positive, show­ing activity and this is interesting because IgM tradi­tionally had been thought to be a sign of early response to disease. But we have learned now, over the last ten to twenty years, that when you have a disease reactivate, that sometimes the IgM can come up again. I use this to follow patients that have IgM positivity to see if they are getting better, especially if clinically they're not get­ting better. If we see the IgM getting better, that's a clue that we are making progress even though clini­cally it hasn't quite caught up with it yet. The SPECT scan also is something that you can repeat and it shows reversible changes, that is it comes back to normal. and that is a heartening sign about Lyme disease in that things are generally reversible.

Q: In your estimation, what percentage of CFIDS or CFS patients actually have Lyme disease, and are you concerned about the number of patients who are in­fected with Lyme disease and not being treated?

A: Regarding the issue of patients who have fibromyal­gia (FM) or CFS and how many of those have Lyme disease, I have not done an assessment of patients who have CFS to see what proportions of those have posi­tive Western-blots. A lot of those questions have been asked, but researchers have used the titers, for example, or a Western-blot technology, where the diagnosis can be missed, especially in this part of the state, where the one and only company does not do an IgM blot but only does an IgG blot.

So 1 think that we need to re-ask this question of the CFS patient and to screen patients from various parts of the United States with a Lyme disease Western-blot, recognizing the limitations of the blot as I have said before, to see how many of those have Lyme disease. I would say that if you have CFS or FM and you have prominent musculoskeletal symptoms and memory dysfunction and you live in an endemic area like here in the Northeast, or the mid-Atlantic states, that operationally you are better off being considered as if having Lyme disease. At least you have a chance of a definitive treatment and perhaps even cure with the antibiotic treatment as opposed to relying totally on symptomatic relief, exercise programs, and cognitive behavioral therapies to try and improve your control of the disease. This is not to belittle those symptomatic relief programs, but they don't get at the underlying cause.

Q: What percentage of patients exhibit the classic signs of Lyme disease, such as a bull's-eye rash, after being bitten by a deer tick carrying the spirochete that causes Lyme disease? What happens in the process of con­tracting the bacteria from the deer tick?

A: As far as the number of patients with Lyme disease who have a tick bite or a rash, those estimates are un­clear in my studies. About a third knew they had a deer-tick bite and about a third had a rash they thought was an unusual rash. The recent vaccine studies by Smith-Kline clearly show that half the patients who have rashes do not have a typical rash, and those are culture proven Lyme disease bacteria. So we have to get away from the idea that Lyme disease rashes are always bull's-eye rashes and are always big, because that is not the case. Once the tick has bitten the person and the bacteria have entered the body, you don't know which ticks are infected and which one is going to re­sult in persistent infection. Those bacteria enter the bloodstream and can stay around in the blood stream for a while, but then rapidly find their hiding place, which is probably in the nervous system along the spinal routes and the sensory ganglia as well as in the brain, probably the temporal and frontal lobes. Whether they go to other places like the peripheral nerve endings in the skin or whether they actually go to joint tissue itself, or if it's the nerves going to the joint tissue is unclear, but it certainly is a neurologic disease and not the rheumatologic disease that it was once thought to be.

Q: What is your usual recommendation for treatment as far as choice of drugs and duration of treatment?

A: The treatment of Lyme disease is basically antibi­otics at this point and it has to be the right antibiotics, not just sensitive by the test tube but probably antibi­otics that can get inside cells. The major ones that do that, or the only ones, are the tetracyclines. Doxycycline and Minocycline are the types of tetracycline. I prefer the old-fashioned tetracycline compound itself because it is a higher dose, less protein-bound and in clinical expe­rience appears to be more effective. The alternative is to use one of the erythromycin drugs. The newer ones are Clarithromycin, called Biaxin, and Azithromycin or Zithromax. They are more tolerable than the ery­thromycins, have high activity against the bacteria in the test tube and get inside cells. Now interestingly enough, once it gets inside cells the journey is not completed be­cause if these bacteria are living in an acid compart­ment, as I believe these bacteria are, then the ery­thromycin group doesn't seem to work as well in acid. I have taken to using a quinine drug (trade name Plaquenil, chemical name hydroxychlorquin) that has been used effectively for years for treating rheumatoid arthritis or lupus for reasons that aren't exactly understood. This does change the pH and acidity inside cells to allow the erythromycin type antibiotic to work more effectively.

I have found in clinical practice over the past five years that this is an effective and nicely tolerated regi­men when you take it twice a day with food. The treat­ment duration is a key issue. Not only does it take a longer time to start having a response with treatment for Lyme disease, but it takes a minimum period of a number of months to get a good effective response. So if you concluded that one month of treatment was enough, you would be missing the boat. Usually we call it a three-month trial to even see if you start to get better, and once you start getting better we keep go­ing until you are all better, or until you reach a plateau and then we change you to another treatment program. Usually if you have been sick for more than a year, you need about a year and a half of antibiotic treatment ro­tating between one type of antibiotic and then another.

Regarding patients with CFS and how those symp­toms can mimic those of Lyme disease, as far as 1 know they are identical to Lyme so I can't tell one from the other. So are we facing a series of multi-symptom ill­nesses, some of which are Lyme disease and some of which are not Lyme disease? I suspect that there are other diseases besides Lyme that cause a Lyme-like ill­ness. Until we can discover those, I don't know how to approach them, because if they are viruses they won't respond to antibiotics, but if they are Lyme or Lyme-­like bacteria they will respond to certain antibiotics. That is why I would encourage people with CFS to ap­proach the possibility that they have Lyme disease.

Q: What can a patient do who would like to be tested using your criteria? I understand that some people have a very difficult time finding a physician who will use the labs that you recommend.

A: Regarding issues of HMO and primary-care physi­cians: if they are not willing to recommend referral to somebody who is more Lyme-literate then that becomes a problem. You can go through appeals and success­fully ask for a referral to somebody who knows more about Lyme disease. That physician may or may not be an infectious-disease physician, but there are also un­fortunately few physicians who are aware of the chronic Lyme-disease state.

As far as laboratory testing there are several labo­ratories that are probably adequate. The one I use is BBI North American Labs. (Their number is 1-800­-866-6254.) Igenex in California does a very good Western-blot, and Cambridge Biotech also does a good Western-blot. Those are the main laboratories that are contracted with by organizations to do a partial blot so one would have to be aware of those possible limita­tions. (You want a full Western-blot) Keep in mind, a negative test doesn't exclude Lyme disease and a posi­tive test does not prove Lyme.


An Editorial Postscript on Lyme diagnosis and treatment

by Ken Casanova

Consideration should be given to whether a "ME/CFS" or "FM" Western-blot-negative patient has had prior tick exposure.

Anyone ill with Lyme disease for 1 to 2 months has progressed to a chronic Lyme-disease state. Antibi­otic treatment for chronic Lyme involves oral antibiotic therapy for 4 to 6 months; for more seriously ill pa­tients, or patients ill beyond one year. Dr. Joseph Bur­rascano, Jr. (another Lyme-disease expert), recom­mends intravenous antibiotics for 6 to 10 weeks or longer, followed by oral treatment or intramuscular in­jections for many weeks or months thereafter.

Because of the potential length and intensity of this treatment regime, it is sensible, to the extent possible, to try first to determine whether or not patients really have Lyme before committing them to treatment on an "operational" basis.

There are other tests besides the Western-blot. According to Dr. Burrascano, "Antigen tests including PCR are now available... sensitivity re­mains poor, possibly less than 30%.. . Therefore, multi­ple specimens must be collected to increase yield..."

There is also a Lyme Urine Antigen Test.  Moreover, in a chapter from his new book, The New Lyme Disease: Diagnostic Hints and Treatment Guidelines for Tick-­Borne Illnesses, Dr. Burrascano lists a series of fac­tors, signs, symptoms, and laboratory tests, that­—when evaluated together—can indicate the presence of Lyme as "Highly Likely," "Possible," or "Unlikely."

A patient should spend some time educating himself or herself on diagnostic methods, treatments, and who are the most experienced Lyme clinicians, based in part on their use of the most current diagnostic and treatment approaches.

You can obtain Dr. Burrascano's 1998 and 2000 recommended treatments for Lyme online. Also, here in Massachusetts, you may contact the Massachusetts Lyme Disease Coalition, P.O. Box 1916, Mash­pee, MA 02649, 1-508-563-7033, for further informa­tion.

My Perspective on the Making of a Support Group

by Nancy B. Smith

(This is a very helpful article on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) support groups and how they can meet the needs of patients and their families. Anyone in a support group, looking for a group, or support group leaders will benefit from reading Nancy's thoughtful article.Ed.)

There are many reasons support groups exist. They also have different styles and formats.

Support groups exist so that people can reach out to each other and not feel so isolated. They are there to exchange medical and support information, and to keep patients active and encouraged.

What many patients have not had is the luxury of thinking about the purpose, for­mat and leadership style of the group, and whether these factors are suited to them.

Many leaders are gradually recruited into the role or inherit the role from a previous leader. They too, have to ask themselves important questions to help the group thrive and to thrive themselves.


What do I want from a support group?

You need to ask yourself what you want from a group. The answer could be friends, general information, a place to be with others in a similar predicament, information on local doctors, the latest in medical treatments, answers to questions you can't ask anyone else, a place to vent your frustrations or be validated.

Remember validation is important.

Don't overlook the fact that many support groups welcome family members.

Having a family member as part of a support group accomplishes two things; it can help family members get information and a better under­standing of this illness and it injects a healthy person into the group.

Also, frustrations abound when the family status quo is tipped on its head as a family member gets ill and unable to fulfill the role he or she once did. That bur­den is often shifted, silently, and in some cases, with anger, from the patient to a healthy per­son. Support group meetings are a place where that is understood. This illness doesn't just affect the patient, it affects the patient's total support network.

You need to keep in mind these are self-help, mutual aid groups. People seeking support should try to be realistic in their expectations.

There are some things that go beyond the limits of what a support group is able to offer, like spend­ing a lot of time or attention on a par­ticular individual's vast array of prob­lems. If a person has a lot of personal issues to work through, then perhaps professional counseling would be appropriate to address these in greater detail.

A support group can allow people to bring up things that are troubling them, but it cannot take on the responsibility of solving their problems. The support group may be able to direct people to certain practitioners or institutions for help.


How is a support group born?

With a lot of labor pains and no spinal blocks! In many cases, a group of people dealing with the same issues will form a loose group, getting together to provide emotional support, to net­work and exchange information.

Most often there is one person that seems to get things going. Eventually, it becomes a larger group and before you know it, a formal support group has been formed, with regular meeting times and locations.

As groups grow, so do their func­tions. Many groups may go a step further by seeking ways to actively participate in commu­nity education—offering workshops, lectures and outreach efforts. Patient education is a major function of support groups.

As the group gathers steam and someone's living room no longer serves, the gathering place may be switched from a home to a hospi­tal or church. This provides some stability, and in certain circumstances, lends credibility to the group.

A hospital-sanctioned meeting makes for a better press release, but be aware that, on rare occasions, meetings might be attended by staff members who may monitor the kinds of topics being discussed and may even try to pro­mote services offered at the facility.


How does a support group leader evolve?

There are many answers to this question.

  1. A person feels that s/he could do some good, sees a need and fills it, somewhat selflessly.
  2. A person is looking for information for him or herself, ends up sharing with others and a group is born. Taking and giving is a good thing, especially when it is balanced. However, in life, nothing is perfectly bal­anced. So a warning for ME/CFS patients: Be aware of how much of yourself you give away. Watch yourself and don't over-do. However, do not protect yourself to the point where you don't do anything. Being totally selfish is only taking, and is just as unbal­anced and unhealthy as being totally selfless. In this writer's experience, it is the balance between the two that is the goal.
  3. The leadership position is arrived at by default. A person ends up as the leader, not by deliberate choice, but because no one else has stepped forward.
  4. A person has leadership skills, can work well with others, delegates jobs and coordi­nates people. S/he takes the leadership role naturally.
  5. A leader has stepped down and the next in line takes over, just to keep the group going. In many cases, this works out well. Some­times it doesn't and the group falls apart.
  6. An ego trip: Some people like the idea of being a leader, but in reality, their skills fall short. 

What is involved in running a support group?

The answer can be "a lot" or "a little." If you're interested, the Massachusetts CFIDS/ME & FM Association has information for starting a support group, and will be happy to help.

We'll start with "a little." A few people get together once a month at someone's house and exchange ideas, medical information, doctors' comments etc. At the least, it is a social hap­pening for a very ill and isolated person.

It may look like nothing to someone healthy, but many times, just getting to that meeting means every­thing to the patient. And it has taken every­thing for her to get there.

The experience of being at a meeting is validating, especially in a group of equals. Patients who have to interact with invalidating, dismissing and negative fam­ily members, as well as medical personnel, can find support groups a very helpful and necessary lifeline.

If the group is formal (never in dress code), it may put ads in the local newspaper and/or bring in speak­ers. At any meeting refreshments may be offered. This is only possible when there are enough volunteers to provide it (assuming the group has no money to foot the bill), the rules of the building allow food, and there is space to set it up. If it is the intention of the group to provide refreshments, it takes a lot of coordination and work.

Reminding ME/CFS and FM patients of meetings also seems to be a constant necessity. The group leader may call members prior to the meeting to remind them. This works well when the group is small, but as the group becomes larger, time and help become limited.

One option is to create a telephone squad. The membership list is divided up and each person calls a few members. This works well to keep folks in touch with each other, but begins to unravel if a caller's list becomes too long.

"A lot": With growth come more needs and the call for more volunteers. The more people that help, the more you can accomplish. Some groups go to health fairs, hold seminars for medical personnel in their area, give lectures, work with the school system, conduct advocacy campaigns, hold raffles, coordinate with outside groups for interdisciplinary lectures, etc.

Exhausted yet? Some groups have run medical conferences. These take work and money, but the payoff is fantastic if just one doctor out there gets it!


Dealing with burn-out

Sometimes, when the group gets to be a lot of work and too much of an energy drain, support group leaders may find that leading the group has become too much, but they are reluctant to quit. It is at this point that tempers may become short and the leader may need to step back and reassess the situation.

As leader, the question to ask is, "Do I still feel good about what I'm doing?" As long as the answer is yes, go for it. Again, members should be realistic in their expectations.

A self-help support group is really supposed to be just that—a body of indi­viduals who have come together for a purpose and ideally, are working together in achieving mutual goals.

It may be helpful to spend a meeting discussing exactly what the objectives of this group will be and new members should be informed about these as they join the group. At least people would. know what they could expect from. this particular group.

Group leaders would be general­ly expected to supervise the main functions of a group, such as conducting the meetings, guiding the discussion, distribut­ing information, being able to listen and receive feedback, and generally overseeing that the meeting is running as smoothly as possible.

These general functions should be broken down into numerous, individual duties and be shared by all the members. We recommend co-leaders wherever possible to help reduce the burden on volunteer leaders.

Realistically, it becomes very hard for one person (the group leader) to take care of all the needs of the group by him/herself. No group should be dependent on "one" person.

Members often tend to forget that the group leader is also sick and for some reason, it is common that members do not offer to help, even when asked. After a while, this will negatively impact the group leader.

However, when being the leader has become an onerous and stressful obligation, then it's time to re-evaluate the leadership role or scale back.

There is a big difference between running a group by choice, and finding yourself trapped in the leader's role.

Behavioral attitudes may be a clue if you are not sure what is happening to you. Do you find yourself avoiding group duties because you have "something better to do?" Do you resent time spent on group activi­ties or preparation for meetings? Do you feel the group is interfering in your life rather than helping it? You may have "burn out."

This atti­tude overflows into the meeting as the leader asks for but doesn't receive help. Growth of the group can falter as new attendees come away from such meetings with a bad impression, deciding not to return.


What style does the group present?

Is the group pre-organized, procedure-centered, and formal or does it tend to be free flowing, open and informal?

Watch for your reactions to where the group is on these factors and try to find the group that is right for you. Or, if small changes could make the group work for you, stay with the group and, with respect and care­ful thought, make suggestions.

Size has a lot to do with determining how a group is run.

A small group can handle one-on-one discussions more easily than a very large group, but such exchanges have the potential to slide into a "pity party." A pity party occurs when people sit around feeling sorry for themselves. It is not the same as everyone sharing information. A pity party has the potential to lead to depression and pull all members down. This is one outcome you want to avoid.

Once in a great while, a support group leader has a "victim personality" and the group is run from this perspective. This group tends to disappear because people eventually stop coming. The majority of peo­ple who join a support group are not looking to be pulled down, but lifted. Small groups allow for more co-mingling among members. They are like a small family.

As a group gets larger, the needs of the group expand and volunteers are sought out to meet those needs. In ME/CFS and FM many more people just stand back and take from a group than active­ly give to it. What makes self-help support-groups successful is the number of people giving.

If everybody gives a little, then every body gets something.

Insulation is another viable small-group style. It affords the ME/CFS or FM patient a place to go in order to escape the "world at large." The group doesn't really reach out into the community but offers an island oasis to its members.

For a little while each month patients can be accepted with all their limitations, let their guard down and not have to be on top of "information." This style is an emo­tional support system in which members usu­ally want to know only what pertains directly to them now.


Different group formats

The format of support groups should try to encompass two important areas—a forum for support and sharing and an educational function. Ideally, time should be balanced between these areas according to everyone's needs.

But it is not always easy to maintain this balance and there will be groups that end up adapting to the needs of a select group of individuals—like the new patients only.

Initially, this may seem noble, but there is a disadvantage. If the group has been functioning for a while, there will be a base of "older" members who no longer get anything from the meetings. Since they tend not to speak or share, they lose interest and stop attending. Then the leader is left handling the needs of the newcomers by herself or himself.

Old-member groups are run primarily for those patients who have considerable experi­ence and knowledge of this illness. This format is good unless you are a new member. Then you will feel left out.

How to balance the differ­ent needs of the old and new member is an ongoing dilemma. What some groups have done rather successfully is to start the meeting a half-hour earlier for new members only, so they are, in a way, debriefed. Handouts of printed material are available; thus, new mem­bers have something to read rather than remember.

By the time the regular meeting starts, new members have a sense of what is going on. They may still have questions, but they don't feel completely left out.

The "all talk versus speaker" question is a common issue. Some groups want only speak­ers, and do not allow for discussion groups. These groups serve a very specific need and if your voice needs to be heard, then find a differ­ent group.

If you constantly want to learn and hear from specialists, then this format may work for you. There is no law that says you can only belong to one group. You may have to join several to fulfill all your needs.

Network and speak with many different people. Also, it is helpful to go to more than one meeting of the same group before making a final decision.

The "all talk" group works best if everyone sits in a circle. Usually each person speaks in turn and tells his or her story. This works well if everyone has a chance to speak.

The group usually doesn't last if there are one or two peo­ple who monopolize the time. Many times, a leader will recognize this situation, but not nec­essarily have the means to handle it.

Setting a time limit for each person is a good idea. Redundancy can become a serious problem, especially if there is a steady flow of newcomers speaking.

A skillful leader can keep things moving along. The benefit of this format is that the person speaking finally has a place to be heard. This opportunity is very important to the member if s/he has been struggling for any length of time with invalidation from family members or doctors.

Another format is to have a "specific talk" forum. A particular topic or question is chosen for discussion. Ideally, each person offers his or her ideas. This generates original thinking, and doesn't put anyone in the position of having to tell her personal story.

Sometimes such a ses­sion can get lively and last a lot longer than intended. Asking people to raise their hand to be recognized maintains some decorum and con­trols cross-talk. This works well in groups with more than 6-8 people. There will always be 1 or 2 people in a group, that when given the oppor­tunity, will talk too much.

Leaders, hone your skills!  Knowing the difference between mem­bers that need to talk non-stop, and those that have something to say is important.

Specific subjects, such as advocacy or disability, may hold a continuing interest for many members. If so, a person familiar with these issues may offer a short update at each meeting. Some groups make advocacy or disability their sole reason for being.

Many ME/CFS and FM patients are not able to comprehend the direct link between themselves as a patient, and the importance of research funding and advocacy. Some are cynical about government and politics and withdraw from such tasks.

To some patients, this is a larger concept than they can't presently deal with; they just want the pain to stop. This is totally understandable.

But, activism is an important motivating force for many support groups and their interest in such tasks is essential for progress against the disease. Think again whether you, as a patient, can do your part.


Time and location

Time plays a big factor in support groups as well as location. If a meeting takes place in someone's home, it can be a relaxed format.

If the group is meeting in a structured environ­ment, perhaps a church or hospital meeting room, there may be strict limits on the amount of time the room is available. The average time for a support group meeting is normally 2 hours. After that, attention can flag.

Many groups go for 2 1/2 to 3 hours. Much depends on the member's time and energy.

When 4 or 5 friends get together for an afternoon in some­one's home the time can go very quickly, while for 50 people sitting in an auditorium, 2 hours can seem interminable. When applicable, breaks can be scheduled and refreshments offered.


Speakers

The time allotted to the speaker is another area where there is choice. Some groups prefer to have the speaker for the entire meeting. Others will only allot the speaker half the meeting time, including discussion.

If a speaker is volunteer­ing his or her time to a group, it may be appropriate to offer the entire time to the speaker.

Support group business can be handled quickly either at the beginning or at the end of the meeting.

Keep in mind that meetings can rotate from a speaker one month, to a discussion group or specific topic the next. This model may be the best of both worlds. Whether patients need to talk among themselves or give all their attention to a speaker is dependent on the needs of the group and these needs may change with time.

Flexibility is required to keep a group viable. If the speaker opts for a question and answer peri­od, it can be handled in one of 2 ways: questions taken from the audience by raised hands, or pre-written questions submitted to the speaker. This decision will depend on the size of the audience and the skill and comfort level of the speaker.


How to handle new patients

Have a packet of information to hand out. This system helps conserve time, eliminate repetition and gives the newcomer something to read, take home, and read again.

When newcomers are asked to speak at the beginning of a meeting they may be afraid to say anything. It may be better to run a group that will allow for some type of general discussion first, so by the time new people are asked to participate, they will have a better understanding of the topic.

Getting newcomers involved later in the discussion may also help to decrease any self-conscious feelings they may have. This procedure also gives the older mem­bers a forum.


Assessing your group

In summary, there are many styles of leader­ship and formats possible for a group. However, when a group keeps losing members, it is important for the leader to ask why. Is it because there are members that feel left out, with their needs not addressed? Is it because the leader is the wrong person to be leading the group? Is the group not informative enough or lacking in any fun? Is it burn-out of the leader, a particular important member, or the group as a whole?

Successful groups may have a number of active and knowledgeable members. If the group is large, and the physical setting allows it, smaller groups can be formed for specific topic discussions for a specified period of time.

Running a group is a chore done out of love. For whatever reason, the leaders give a lot of themselves, with usually little or no training in group work. Many support group leaders learn by trial and error.

If a group fails, it can be helpful to figure out why, but it is best done without finger-pointing or blame, either of others, or of yourself.


Feeling Left Behind

This is a topic not often discussed. Sometimes valued members get better, move on in life, and leave the group.

When someone moves on, she might not want reminders of the old times, or she is busy with new activities. Those left behind can feel abandoned. Feelings can be hurt. Promises made to keep in touch are often not kept, so insult is added to the injury of still being ill.

If you are left behind, try to realize that the friendship was rooted in a shared illness, and must end when that is no longer held in common. Don't pine away. Reach out and try to give to the new people in the group.

If one of the group members is expressing excessive feelings of sadness and isolation, that member may be clinically depressed in addition to having ME/CFS or FM. Given the stigma of depression, many patients won't even consider this as a secondary problem.

A person who has lost quality of life due to this illness has cause to be depressed. It is how the reaction is handled that makes a difference. There may be a biologi­cal imbalance beyond the control of the patient that can be easily treated.

Leaders need to be alert to this situation because a serious depres­sion of one member has the potential to pull the entire group down.

Support groups are the roots that nourish us. Initially many people were afraid to go to a meeting. When asked why, they usually said something like, "I don't know what I was afraid of." The unknown can be very scary, and the ME/CFS or FM patient is already handling a mysterious illness. Our hats are off to those leaders who persevere, trying to help, and to those group members who do whatever they can.

Try to do whatever you can and the rewards will follow.

Steps To Happiness

Everybody Knows:

You can't be all things to all people.
You can't do all things at once.
You can't do all things equally well.
You can't do all things better than everyone else.
Your humanity is showing just like everyone else's.

So:

You have to find out who you are, and be that.
You have to decide what comes first, and do that.
You have to discover your strengths, and use them.
You have to learn not to compete with others, because no one else is in the contest of being you.

Then:

You will have learned to set priorities and make decisions.
You will have learned to live with your limitations.
You will have learned to give yourself the respect that is due.
And you'll be a most vital mortal.

Dare To Believe:

That you are a wonderful, unique person.
That you are a once-in-all-history event.
That it's more than a right, it's your duty, to be who you are.
That life is not a problem to solve, but a gift to cherish.
And you'll be able to stay one up on what used to get you down.

Anonymous

Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.