Rainbow at shoreline

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.

Workshops

Before the formal conference 4 workshops were available and well attended:

Treating Pain, Sleep and Fatigue—Charles Lapp and Lucinda Bateman

Workshop 1

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.

Pain

Treatment of pain was addressed non-pharmacologically and pharmacologically.

Non pharmacological approaches included:

Pacing

CBT

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

Sleep

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:

Non-restorative sleep

Difficulty in initiating and maintaining sleep

RLS/PLMS

Nocturnal myoclonus

Vivid dreams/nightmares

"Tired but wired"

Phase shifting

Dysania

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

Sleep hygiene

CBT

Medication

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

Fatigue

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

Structured schedule

Activity/exercise plan

Stimulants: caffeine, amantidine, methylphenindate, modafinil

Antidepressants: Bupropion, fluoxetine

CBT

Self care techniques: books, CDs etc, coping skills, Campbell course

Gupta course

Emotional support

Cognitive techniques (distraction, prioritization, reframing)

Behavioral Assessment and Treatment of ME/CFS—Fred Friedberg and Leonard Jason

Workshop 2

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.

Workshop 3

How to apply for grants - Eleanor Hanna

 

Workshop 4

Research 101 - Suzanne Vernon

 

ROSAMUND VALLINGS, M.D. BS

With thanks to ANZMES, who have provided funding for me to attend this conference

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.