Ask the Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Doctor
Dr. Lapp is an internationally recognized expert in ME/CFS. He has written numerous articles and has spoken widely concerning ME/CFS and Fibromyalgia.
Ask the Doctor: Will it help me to eliminate gluten and milk?
Answered by Dr. Charles Lapp
Q: Will it help me to eliminate gluten and milk?
A: Many of our patients report intolerance to both gluten (wheat products, barley, and rye) as well as dairy products.
These intolerances are rarely caused by true allergies to gluten (celiac disease or sprue) or dairy (milk protein allergy).
Researchers in Belgium have also suggested that many PWCs are intolerant of fructose as well.
Consider avoiding each of these offenders for several days to see if it makes you feel less symptomatic.
More Q & A's
How can we make our support group more supportive?Answered by Dr. William Collinge, PhD, MPH*
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Editor's comment: The New Year seems like a great time to start a new support group. This post, originally published on October 3, 2009, offers guidance which is equallly relevant today.
When support groups become healing groups, a great deal of new potential is available to all.
In meeting the challenges of chronic illness, a support group can make a big difference in your self esteem and sense of hope. This is particularly true if you have been recently diagnosed and are bewildered by all the confusion and ambiguity surrounding the illness.
But some supports are more effective than others in this regard. I have seen many people benefit tremendously from support groups. And now, there's scientific evidence that being in a support group can actually speed the healing process.
On the other hand, many patients have told me that they quit going to support groups because they found it a depressing and demoralizing experience. They actually felt worse afterwards, emotionally and physically. It seemed that what was being supported was an attitude of helplessness and hopelessness.
Why the mixed reviews on support groups?
Clearly there is a wide variation between different groups. The success of a group is determined by its approach to three important elements:
• Interpersonal support,
• And healing.
Picture a triangle with each of these elements as one point, each connected to the others. Without any of these elements, the triangle would be incomplete, and the group would not live up to its potential.
The educational function of a support group is to give:
• Accurate, unbiased information about the illness,
• And effective ways to cope with it.
A support group should take care to challenge misinformation or mistaken views in every meeting, and not allow them to flourish.
For example... a common myth about ME/CFS is that there is no effective medical treatment for this disease. There are several different traditions of medicine available. Conventional western medicine excels in surgery and emergency medicine, but no cure for chronic illness like CFIDS. However, it can help a great deal with some symptoms. And Chinese medicine, herbal medicine, naturopathic medicine, Ayurveda, and other traditions have all been used effectively by people who have improved.
The social isolation endured by many people with chronic illness is a real obstacle to their healing.
• Recent research has found that poor social support is a risk factor in recovery from ME/CFS and other illnesses.
• People who have supportive relationships, combined with using a daily self-healing practice such as meditation, do best.
• People who have little social support, even if they do a lot of daily self-healing practice, don't do as well.
Such support includes three aspects:
1. Validation of Feelings. Interpersonal support happens within group meetings when people share their feelings, their gains and losses, and simply listen to each other with compassion.
• By sharing your feelings, they become more tolerable.
• Whatever your feelings are, positive or negative, they are valid.
• You can also help others to see that they are not alone in what they are feeling.
2. Sharing Success Strategies. Another important aspect of interpersonal support is the sharing of strategies that people have found success in managing their symptoms.
• The real experts on this illness are people who experience it every day.
• It's very important to talk about what works in daily living, and reinforce that in each other.
• Share with each other how you have applied the 50 percent solution [see “Promoting Recovery: The Fifty Percent Solution”], how you use rest strategically, how you deal with the sleep disorder, or how you handle stress.
3. Continuity Between Meetings. Finally, interpersonal support need not end when the meetings end.
• Connect with each other during the week, by phone if not in person.
• One effective group used a "buddy system" in which people paired off and called their partner on alternate days of the week to offer encouragement and reinforce the other's healing practices.
Support groups can become healing groups. A healing group is a group in which healing actually takes places within the meeting itself. It may seem like a bold move to begin incorporating healing activities into your support group meetings, but it can easily be done and many groups are doing it now.
Here are a few ways to incorporate some healing time into your support group meetings:
1. Reserve a block of time in each meeting for healing activity. This may be the second half, or the last half hour, at least.
2. Use the time to listen to tapes of guided self-healing practice. This may include meditation, healing imagery, or breathing exercise (not informational tapes!)
3. Share your expertise with each other. Many group participants have expertise in strategies that can be shared with others in the group. You need not be a professional to do this. If you have a particular routine that works well for you each day, someone else in the group may really benefit from your "teaching" it.
4. Invite guest healers to come and share their work. Therapists and other people who teach healing methods can come and guide the participants through an experience of their work. They appreciate such opportunities to become more known in the community because they are always looking for new clients.
Methods which can be taught and practiced in support groups include:
- Healing imagery,
- Relaxation techniques,
- Breathing techniques,
- Art therapy,
- Therapeutic journal writing,
- Or a prayer circle (consider giving each person a turn being the focus of the group's prayers).
A support group need not just be an "information clearinghouse." Rather, it can be a live experience to all who are participating. When support groups become healing groups, a great deal of new potential is available to all.
I wake up each morning feeling tired, even though I’ve slept. Would sleeping pills help me get better sleep?Answered by Lucinda Bateman
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Q: I wake up each morning feeling tired, even though I’ve slept. Would a sleep study be useful? Would sleeping pills help me get better sleep?
A: Unrefreshing sleep is a defining characteristic of ME, CFS, and FM, so feeling “refreshed” or energetic might not be realistic. A more achievable goal is to seek the most restorative sleep possible, which may require excluding primary sleep disorders and other disrupters of sleep.
Sleeping pills do not guarantee better quality sleep or resolution of ME/CFS and FM symptoms. On the other hand, sleep disruption and insufficient sleep invariably worsen fatigue, pain, brain fog and stamina. I advise careful assessment of each person’s sleep disruption in a very practical way, followed by a behavioral approach (good sleep hygiene) and intelligent use of medications - directed at a specific cause of sleep disruption if possible - in the lowest possible doses.
Will it help me to eliminate gluten and milk?Answered by Dr. Lucinda Bateman
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Q: Will it help me to eliminate gluten and milk?
A: Eliminating gluten or milk is likely to help only if you are gluten sensitive or milk intolerant. Although some laboratory tests are available, the most reliable way to know is to make systematic dietary changes and observe symptoms.
Discovering these food sensitivities and treating them can be immensely helpful. Unfortunately, there are probably lots of people with chronic illness symptoms that won’t respond to these interventions.
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Note: This information has not been reviewed by the FDA. It is generic, is not intended to prevent, diagnose, treat or cure any illness, condition or disease, and is not meant to replace the personal attention of a medical professional.