The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & 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.
- Last Updated: 28 November 2015 28 November 2015
Before the formal conference 4 workshops were available and well attended:
Treating Pain, Sleep and Fatigue—Charles Lapp and Lucinda Bateman
This presentation was divided into the 3 parts and gave an excellent overview of the 3 topics and included case studies. Much discussion was generated.
Treatment of pain was addressed non-pharmacologically and pharmacologically.
Non pharmacological approaches included:
Counselling, hypnotherapy, biofeedback
Restoration of sleep
Gentle physical conditioning (stretching, strength, aerobic)
Massage therapy, physical therapy etc.
Pharmacological tools included:
Anticonvulsants: Pregabalin, gabapentin, topiramate, zonisamide
Serotonin norepinephrine reuptake inhibitors: Duloxetine, milnacipran, venlafaxine
Dopamine agonists under study: pramipexole, ropinirole
Hypnotics under study: sodium oxybate
Opiods: (a last option) - less effective for chronic than acute pain, severe side effects, withdrawal problems. Tramadol, methadone, hydrocodone, oxycodone, morphine, fentanyl,subooxone
No specific sleep disorder is characteristic of defining CFS/ME/FM, but sleep disorders are highly prevalent. Management of sleep seems to be the key to improvement.
Characteristic sleep patterns:
Difficulty in initiating and maintaining sleep
"Tired but wired"
Undiagnosed sleep disorders should be considered. Upper airways resistence disorder (UARS), when patients do not meet criteria for obstructive sleep disorder is common in CFS. This is accompanied by erratic breathing, drop of oxygenation, frequent arousals and daytime fatigue plus other symptoms. Treatment may relieve some symptoms.
Treatment of Sleep Disorders Associated with CFS
Rule out sleep disorders
Reduction of pain (as above)
Dopamine agonists: ropirinole, pramipexole (RLS,PLMS)
Simple measures: antihistamines, melatonin (watch for rage reactions at high dose)
Non-benzodiaepines: zolpidem, eszopiclone, zaleplon, ramelteon
Clonazepam: (myoclonus, restlessness)
Tizanidine: may enhance sleep and reduce self talk
Tricyclics: amitriptyline, cyclobenzaprine
Sleep maybe disturbed by benzodiazepines, some opiates, some SSRIs and DOPAs,Alcohol
This session covered general causes of fatigue, and there seems no way to really define or measure it. There are many different types of fatigue reported. Fatigue may be physical, mental/cognitive or motivational. The nature and severity of fatigue must be addressed, and this incudes: Interference with daily activities, post-exertional effects, diurnal effects and relief or not by rest. Mood disorders have a complex association with fatigue.
A number of fatigue measuring instruments were evaluated.
Management of Fatigue
Elimination of sedating medication
Treatment of depression
Stimulants: caffeine, amantidine, methylphenindate, modafinil
Antidepressants: Bupropion, fluoxetine
Self care techniques: books, CDs etc, coping skills, Campbell course
Cognitive techniques (distraction, prioritization, reframing)
Behavioral Assessment and Treatment of ME/CFS—Fred Friedberg and Leonard Jason
This workshop focused on the understanding of ME/CFS and the management from a behavioral point of view. Leonard Jason began with a good overview of the history, biological, social and psychological factors in this illness, the importance of accurate diagnosis and how to distinguish the illness from anxiety and depression. This was followed by a presentation covering the behavioral assessment and treatment of CFS by Fred Friedberg. Sleep management, pacing, behavioral intervention, coping skills and the importance of emphasizing pleasurable feelings were all covered in depth.
This was a session in which audience participation and much interaction was involved. There was a wide range of participants from disciplines of general medicine, psychiatry, research, psychology and complementary medicine. Questions and areas of interest were posed by the audience, which were then ably covered by the 2 leaders, with their background of wide experience, expertise and research work. Many different techniques were discussed among the audience looking at CBT, simple strategies to improve coping skills, the importance of social support and relaxation approaches.
By the end of the workshop, after much interactive discussion, most people came away feeling there were plenty of simple options to offer patients with this perplexing illness.
I was not able to attend the following 2 other workshops, as one had to make a choice, and I hope these will be covered by another attendee.
How to apply for grants - Eleanor Hanna
Research 101 - Suzanne Vernon
ROSAMUND VALLINGS, M.D. BS
With thanks to ANZMES, who have provided funding for me to attend this conference
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Notice about names
The Massachusetts CFIDS/ME & 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) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.