Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

The main goal of most support groups for people with chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivities, tickborne diseases and similarly devastating disorders and diseases is to provide information about the signs and symptoms of these diseases and disorders and how to deal with them. That information and support generally includes:

• Local resources for the diagnosis, testing, medical and other care related to these diseases and disorders;

• Referral, and sometimes access, to additional information, such as articles, books, tapes, journals, etc., through which the support group members and general public may learn more about these diseases and disorders, symptoms, tests and treatments, and how to apply for disability and other benefits;

• Access, through use of its monthly meetings and occasional personal contact with members, to information and support in the form of exchanging information on coping strategies, responses to medications, supplements and treatment modalities;

• Information about other community resources that may assist other members; and

• Helping members to learn how to advocate on their own behalf for the medical services they need.

For some of these organizations, future funding, through grants and large donations, may enable them to help some of the needier members to meet some of their emergency expenses. The services provided by the majority of volunteer-run support groups generally does not include crisis line counseling, paying for medical, diagnostic or therapeutic services, nor arranging for housing for members or others.

What often is forgotten or ignored by those seeking help is that in many health-related support groups, the organizations' volunteers have been sick themselves for a long time with one or more of these disorders and are, like the rest of the members, eking out their subsistence on long-term disability, SSI or SSD.

Many of live alone and do not have any family or partners who can help with expenses or their daily needs. Most go without treatment and medication on an on-going basis because they cannot afford it. It is unreasonable for members of the group or the community at large to suggest, hint or in any other way try to get a support group volunteer to pay for the services that member needs.

Just as the organization and its volunteers cannot provide financial support for members, most cannot provide crisis counseling for people who are suffering from acute or transitory depression or who are considering suicide.

While some of the organizations' members and volunteers may have the education and training in the mental health field, they are themselves ill. The rest of the volunteers do not have any such background or training. The volunteers, whatever their background, who talk to callers are volunteering to provide information on the disorders and local resources. It is inappropriate - and highly inconsiderate - to use them instead of the available mental health resources available in our community.

Most of the physicians who treat our patient population are inundated with patients like us: extremely sick, with wildly differing emergent and ongoing health problems, and almost all with a greater or lesser degree of mental health problems, either pre-existing and made worse by the illness, or brought on by the illness or treatment. Coupled with cognitive problems and emotional lability, we can swing between rage and profound depression in a heartbeat.

While it is tempting to call our support group volunteers or physicians to plead or demand or whimperingly beg them to get us through such a crisis, that is not a role they can fulfill, nor should we expect them to.

Mental Health Intervention
One of the battles those with CFS, FM, MCS and TBDs face is the disbelief amongst their families, friends and, too often, health care providers whose position remains, despite the ever mounting research and clinical documentation to the contrary, that these disorders are strictly psychological in nature. Those patients who have stacks of lab test results and reports documenting the myriad endocrine, immune, and neurological abnormalities know how real they are.

But knowing that they are real that doesn't mean that we can't become depressed as a result of the changes imposed on our lives by the day-to-day and long-term realities of these disorders. And because the population of those with CFS/FM/MCS/TBD represent a cross-section of society, it is not surprising that, since depression due to other causes is also found throughout the general population, some of the people with depression will also develop CFS/FM/MCS/TBD, albeit unrelated to the pre-existing depression.

People who never previously suffered from depression disorders may well develop depression in some form as a result of becoming ill with CFS/FM/MCS/TBD. Those who already suffer from a depression disorder may become more so for the same reasons as those who never previously experienced depression. The changes that can affect both of these populations occur as a result of the major life and health changes that intrinsically alter how they perceive themselves and how others perceive and respond to them:

• the inability to work and support ourselves;

• the inability to obtain the medical services and medications our doctors prescribe, assuming we can afford to see the knowledgeable doctors to begin with, or are able travel the distance to see them;

• the loss of interaction with family, friends, and community;

• the loss of ability to do things that used to give us joy, such as playing instruments, creating fine embroidery, jewelry making, oil painting, or simply reading a book.

When these losses happen to people with marked disabilities or terminal illnesses, no one tells them "it's all in your head" or "it's just depression." Their losses, their grief, are validated by society, by their family and friends, their social worker and their health care providers.

This societal acceptance, unfortunately, does not exist for those with CFS/FM/MCS/TBD. But there are mental health resources in the community that one can turn to when depressed or in crisis and in need of more than a few minutes of understanding conversation and telephonic hand-holding to just get it out and get on.

Many people with CFS/FM/MCS/TBD are leery or loathe to address their depression, feeling that to do so somehow invalidates their illness or that seeking appropriate treatment will somehow prove all the nay-sayers out there right: that it is all in their head.

If you do not initiate discussion about the depression with your physician, you won't get tests done that can identify one or more neurobiological bases for the depression. Letting a neurobiological or any other type of depression go untreated will make you sicker in the long run and less able to make significant progress towards a degree of recovery of some of your lost function and abilities.

Having a depression disorder doesn't mean you aren't really sick with the CFS/FM/MCS/TBD. Someone with CFS who is later diagnosed with diabetes still has CFS. Instead of having one disorder to deal with, however, they now have two, with both conditions requiring proper treatment and management. It is no different with depression.

Secondary Depression Due To Chronic Illness
Secondary depression that follows the onset of a chronic disease or life-altering event, such as the loss of a loved one, is generally transient. The length of time it exists can vary from a few hours to a few months or a year or more. It may come and go for the rest of one's life as things occur: frustrations at not being able to accomplish what used to be a simple or effortless task; figuring out how yet again to rob Peter to pay Paul out of the always-insufficient monthly disability check; or when yet another idiot badgers you for looking "too healthy" and using an "ill-gotten' disability placard to enable you to park in a disabled parking space.

Sometimes, just venting a bit to someone who understands is all that is needed. Calling such a friend or one of the support group's volunteers can be a good outlet for such venting.

Prolonged or recurring bouts of secondary depression should be discussed with your physician. You may need a short-term course of antidepressants, or you may have a new neurobiological problem that is causing, among other things, depression. Hypothyroidism can cause depression, as can too little growth hormone. Certain chemicals made by the brain may be made in too little or too high a quantity or the body may not be converting them properly, resulting in depression. These disorders can be diagnosed with the appropriate lab tests and treated with prescription and other medications prescribed by a knowledgeable physician.

If you turn out to be okay these biochemical areas, then talk to the doctor about the use of herbal and/or prescription antidepressants, come to agreement on a plan of treatment, and keep in touch with the doctor as you find out how the substances are working. Often, after months or a couple of years on one or more antidepressant substances, you may find that you can do just fine without them, resorting to them on an as-needed basis in the future.

With milder forms of secondary depression, sometimes it just takes the aforementioned short understanding contact and a bit of light, unrelated chatter with someone who understands what it's like to live with what you are now living with. Sometimes, one just needs reinforcement that the various symptoms, deficits and frustration are normal for CFS/FM/MCS/TBD or medication side effects.

Sometimes, however, more is required. At that point, it is no longer appropriate to call the support group volunteers. Instead, it is time to see your physician if you need to get tested, or have your medication tweaked. For talking and venting, however, a mental health worker is a better way to go, especially a counselor or therapist who has a great deal of experience in working with people dealing with chronic illness.

There are mental health care providers who have experience working with those dealing with chronic health problems, just as there are ones who are experienced in working with adult survivors of child abuse and ongoing abuse victims, post-traumatic stress disorder, the elderly, and so on. If you don't already have a mental health provider yet you are in need of such help, it's time to find one.

Primary Depression
Primary depression is generally due to a biochemical or structural abnormality that results in depression. This is not to say that people with a depression disorder, such as bi-polar disorder, cannot also have CFS/FM/MCS/TBD, but unless the primary depression disorder is treated by appropriate health professionals, the depression may become more severe and co-mingled with the life changes caused by the other illnesses. Both conditions must be treated, and treated by the appropriate mental health and health care providers.

Treatment for primary depression disorders is should be more than just getting a prescription for antidepressants filled and off you go, popping your daily dose of cheer. Not all drugs work for all people, the acclimation time may vary, the ideal dose may need to be found by trial and error, different drugs may need to be tried, etc. But drugs alone aren't the answer, especially in the beginning of treating depression with medication to balance the neurobiology.

People being treated for primary depression with medication generally improve faster and are able to make more headway in the rest of their lives if they also meet with a therapist during the first several months or more of taking and fine-tuning the antidepressant. They also meet as needed with their mental health care provider on an as-needed basis, for one session or several, when acute issues arise that affect your ability to function on a daily basis.

Depression Related to Life Experiences
Too often, bad things happen to good people: child abuse, spousal abuse, and emotional battery by family members are but a few that are too common in our society. Abusers and the abused come in all flavors. Many of the adult survivors and victims of ongoing abuse appear--and are--otherwise capable, intelligent, friendly, and helpful members of the community. But when the triggers occur, or the abuse continues, persistent depression can occur.

Like primary depression, appropriate antidepressants and meetings with a trained mental health provider are critical. There are also support groups for victims of ongoing abuse and abuse survivors. These particular support groups and the services they or related agencies offer are an important part of dealing with the issues and facts of abuse.

Early child abuse isn't just a matter of things--a sound, smell, or event--triggering a post-traumatic stress event in the form of a flashback or physiological responses. Indeed, early abuse and traumatic events later in life can actually alter the structure and functioning of the brain.

Neurobiological Causes of Depression
There are some people who believe that there is a correlation between child abuse and becoming ill with CFS/FM. While not all of those who have CFS/FM/MCS are abuse survivors, there are documented abnormalities in the growth and development of the hippocampus [Mukerjee], and in the hypothalamic-pituitary-adrenal axis (HPA) in people with CFS/FM and in survivors of child abuse [Sadek and Nemeroff]. In fact, as research into the brain, neurotransmitters, and hormones is correlated to how the brain functions, new models of depression - and new treatments - are being discovered.

"Among these newly discovered systems are various immune system components, such as cytokines, and the neuropeptide neurotransmitters, such as corticotropin-releasing factor (CRF), thyrotropin-releasing hormone (TRH), somatostatin, and growth hormone releasing factor (GHRF). These new discoveries have served as an impetus for researchers to seek new rational treatment modalities based on these non-monoamine neurotransmitter systems." [Sadek and Nemeroff]

Some of the neurobiological causes of depression can also cause some of the symptoms associated with CFS/FM/MCS/TBD. This makes it important to seek knowledgeable medical and psychiatric resources in order to get the proper testing done to determine the cause of the depression. That is the only way that appropriate and effective treatment plans can be developed and implemented.

Pitfalls of Seeking Informal Support
Remember that the support group volunteers you talk to are themselves ill, and you never know when you call just how fragile they themselves may be on a given day. If your needs are best met by a physician or mental health practitioner, yet you continue to call your support group contacts for reasons related to a mental health situation even after they have recommended you seek professional help for the depression and related issues, you are placing an undue burden on them and may even make them more ill as they try to cope with your problems. Too much of it may result in the support group losing valuable volunteers. You, too, are on the losing end of these exchanges, as you are not getting the type and degree of help you need.

The same problems can arise when you try to use your CFS/FM/MCS/TBD physician as a substitute for going to a mental health care provider. Our physicians tend to be extremely caring people who become overwhelmed by the unrelenting tide of severely ill patients they take on. Through the 15 years I have been ill, I have known of many of our physicians who fell ill themselves, closing their practices, or stopped treating us, going back to a "normal" medical practice in which most of their patients could be easily diagnosed, treated, and cured.

Many of our CFS/FM/MCS/TBD physicians employ very caring staff. But, like volunteers answering calls for support groups, these physician staff members too can become overwhelmed by the anguish and anger thrown at them by patients in very real physical and mental distress. This contributes to highly stress and overwhelmed staff and often high turnover, which increases the stress on the physicians.

Remember, too, that the support group's monthly meetings are for people who are coming to learn about CFS/FM/MCS/TBD, where to get diagnosis and treatment, and to learn how to cope with their changed life. The meetings are for everyone who attends. The facilitators cannot, and should not, let someone who really needs to be under medical or psychiatric treatment use the meetings as a substitute. It is not an appropriate use of the meeting time, nor is it fair to, or considerate of, those who come for information and to be in the company of others who are going through many of the same life challenges.

Support groups can and do, when properly utilized, provide needed camaraderie and uplift those looking for information and ideas in a non-judgmental atmosphere. They aren't a place to come for treatment nor are they a substitute for the proper diagnosis, care and management of any disease or disorder.

An all-volunteer support group depends on volunteers to keep it going as well as members who participate. If the actions of a few members or the general public who avails themselves of the support groups' services drive away other members and volunteers, there will be no organization left to serve anyone.

References:

Mukerjee, Madhusree. Hidden Scars: Sexual and other abuse may alter a brain region. Scientific American, October 1995. Available online www.asca.org.au/pdf_public/newsletter_2003july.pdf, page 4

Sadek, Noha and Charles B. Nemeroff. Update on the Neurobiology of Depression. Available online www.medscape.com

Bremner, J. Douglas. The Invisible Epidemic: Post-Traumatic Stress Disorder, Memory and the Brain. Available online www.tdwsyn.com/articles/behavior/ptsd_4/index.shtml

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