Time for the Big Talk. How's the CAA doing?

[Cort]

CAA CME - Treating Sleep, Pain, OI and Mood

Here's the section on OI

Orthostatic instability. Some CFS patients may present with symptoms indicative of orthostatic intolerance, including low blood pressure, low tolerance for standing, dizziness, lightheadedness, upright tachycardia, and vasovagal syncope.[55,56] Some patients are diagnosed with neurally mediated hypotension (NMH) or postural orthostatic tachycardia syndrome (POTS), which is especially common in pediatric CFS.[57]

Be alert for symptoms of orthostatic instability. Patients may be referred to a cardiologist or a neurologist to confirm orthostatic problems before initiating treatment.
Advise patients with orthostatic problems that they may experience some relief with lifestyle and diet changes such as cutting back on foods that are dehydrating (like alcohol and caffeine), wearing support hose, avoiding prolonged standing, avoiding getting overheated, and keeping feet elevated when possible. Prescribing high-pressure hose may be indicated for some patients.
Use conservative treatment approaches first, like simple volume expansion (increasing both fluids and salt intake).
Consider pharmacologic interventions like fludrocortisone or midodrine if volume expansion doesn't improve symptoms. Exercise caution with this therapy with patients who have high blood pressure.
Consider adding a beta blocker or an adrenergic blocker if there's still no significant improvement in orthostatic symptoms.
Be aware that orthostatic intolerance can cause headaches (activity-related orthostatic headaches), fatigue, and brain fog, so it's important to consider orthostatic problems as a contributing cause of those symptoms in CFS patients.
Be especially alert for symptoms of orthostatic intolerance in adolescents who present with CFS symptoms. Treatment for POTS or NMH can sometimes resolve CFS altogether in adolescents or reduce symptomatology.

Here's their Clinical Pearl

Clinical Pearl

Sleep management is key. Poor sleep worsens other symptoms of CFS, decreases function, and reduces quality of life. It is important to address sleep problems promptly and aggressively. Ensure good sleep hygiene and provide simple sleep aids if necessary. Have a high index of suspicion for primary sleep disorders and refer the patient to a specialist if sleep is difficult to manage.

Next up is Exercise

A Different Definition of Exercise

Managing activity is key to managing the illness itself.[64,65] Many clinicians report that, in the absence of a primary therapy, it is the most effective treatment strategy for most CFS patients.[52] However, there is considerable confusion among both patients and clinicians about appropriate prescriptions for activity and exercise. A different way of defining exercise and managing activity is essential for CFS patients and their healthcare team.

Worsening of symptoms following even minimal exertion is a hallmark of the illness.[66] Clinicians should be aware that advising patients who have CFS to engage in vigorous aerobic exercise and "go for the burn" or "release those endorphins" can be detrimental.[67] Most CFS patients cannot tolerate traditional exercise routines aimed at optimizing aerobic capacity. Instead of helping patients, such vigorous cardiovascular exercise can provoke postexertional malaise, a hallmark of CFS that is defined as exacerbation of fatigue and other symptoms following physical or mental exertion. Even worse, this kind of exercise can precipitate a full-scale relapse that lasts for days or weeks.[68]

Strength and Conditioning, Graded Activity..whoops here's CBT again

Here's an activity regime for severely ill patients

Severely Ill Patients

A subset of people with CFS are so severely ill that they are largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.

Focusing on improving flexibility and minimizing the impact of deconditioning so patients can increase function enough to manage basic activities is the goal with severely ill patients.

Different vignettes from the program....

 

[starryeyes]

Thanks for bringing this to our attention as usual Tee. I hope this information can be modified. Are Drs Lapp and Bateman really that into behavioural therapies and “phobic avoidance” theories? Maybe I'm misremembering but I thought these two had made good, useful comments in the past. Are we sure these two doctors wrote the CBT/GET and “phobic” sections?

Hi Catch, I believe the good parts of this CME were written by the doctors. It's funny how they write about exercise in much the same way we were discussing we wanted it written here, and then went on to talk about nutrition and then next is a section on CBT and then on GET that are completely out of place. Hmmmm....

 

[starryeyes]

From what I know of her, I am impressed with her. I have trouble believing she or Dr. Lapp wrote this, it was probably another author. If they have their names on it though, I think that Dr. Bateman and Dr. Lapp should have looked it over and approved it prior to publication.

Orla had a good point about the terminology- "phobia" means an irrational fear resulting in panic if exposed to the object of the phobia. This is not true of ME patients. This is very obvious to everyone here except you.

My point was we can't have blind faith in the 'experts'. This is lesson one in the story of ME/CFIDS. If you know something is wrong or harmful, don't publish it even if it was written by an expert.

Kim McCleary is one of the authors too and I think I can tell exactly which parts she put in.

 

[Cort]

I'm glad to see that all of you took a look at the parts of the CME that I posted.

Dr. Yes, when I said that I thought the new CME was a whole lot better than the old one, I had not read further down it yet where they started talking about CBT, GET and making disparaging comments. As I went along, I expressed my dismay at what I was finding. I suppose I should have gone back and erased my initial reaction because I do not stand by that statement now that I've finished reading the CAA's Continuing Medical Educational materials for our doctors.

I've had it with the CAA! I agree that you all are right, and I'm appalled at what they have done to us again and again.

????
Can you please not attribute or attempt to attribute portions of the portions of the program you like to Dr. Bateman and Dr. Lapp and portions you don't like to the CAA. They were all authors. None of them would put their names on a document they didn't like.

 

[Lily]

Can someone tell me why Kim McCleary would author any part of this educational piece? What are her credentials?

 

[Cort]

Kim McCleary is one of the authors too and I think I can tell exactly which parts she put in.

That is so unfair. You don't know Kim McCleary. Unless you've gone to a conference I doubt that you've ever talked to her or Dr. Bateman or Dr. Lapp - we don't know who put in what. The organization Kim McCleary heads has devoted alot of money to physiological research - as we've gone over before ad nauseum. They're devoting everything they can to physiological research - gut metabiomes, mitochondrial problems in the brain, vascular issues, etc. They're building a research network, they're facilitating studies on XMRV.....and still these comments keep coming. I don't know why that doesn't make a difference to you at all but its true - a strange research agenda, indeed, for a committed behaviorist - as you chose to protray her.

 

[gracenote]

I'm jumping into this discussion late, and may be a little mixed up, so please ignore if need be.

Going to the CME page, Chronic Fatigue Syndrome: Diagnosis to Management, I found this. Maybe this explains a little of the unevenness in the content.

Editor's Note: This Clinical Update is a collaborative activity with the CFIDS Association of America. It includes information from the CFS Toolkit for Healthcare Professionals, developed by the Centers for Disease Control and Prevention (CDC) and the CFIDS Association of America.

 

[Cort]

They wanted the CDC in there from the get go but the CDC refused. The reason they wanted them in there is because the CDC's name has value to physicians - it adds legitimacy in physicians eyes. The authors of the program, of course, are responsible for all of it. Some portions must have come from Sparks for them to make that claim.

 

[Cort]

I think this last section is really interesting. You can play doctor and see how you score on treating CFS.
http://cme.medscape.com/viewarticle/581527_9

http://cme.medscape.com/viewarticle/581527_9

Case #1: A 45-year-old woman presents to the clinic with a 7-month history of a gradual onset of progressive fatigue. She reports that she is having difficulty getting out of bed in the morning due to the fatigue, and that even the slightest physical exertion causes profound exhaustion. She also reports that her muscles have been aching all over for this time period. Upon further questioning, the patient does report that she has been depressed and finds herself crying for no apparent reason. She attributes her depression to her fatigue, however, and she is worried that it is affecting her performance at work as well as at home. She is unable to concentrate enough to complete her tasks as an accountant and has been reprimanded by her supervisor recently for inaccurate work. Her physical examination is unremarkable.

Which of the following best differentiates CFS from depression in this patient?

• Postexertional fatigue
• Unrefreshing sleep
• Declining performance at work
• Crying spells

Case #1 continued: The patient is started on an antidepressant and cautioned to observe good activity management practices to avoid postexertional malaise. When the patient returns for follow-up 1 month later, she is upset because her family and colleagues do not appreciate the severity of her symptoms. She feels no better; in fact, she reports that her fatigue and pain are worse.
Which of the following will best help the patient maintain her functionality?

• Aggressive symptom management
• A rigorous exercise program
• A combination of antidepressants and anxiolytics
• The patient should apply for disability

Case #2: A 52-year-old man presents to the clinic with debilitating fatigue and flu-like symptoms that have never resolved following a severe viral-like illness 1 year ago. He reports that he is hardly sleeping at all, and when he awakens in the morning, he is very fatigued. Daytime sleepiness is a problem, but he does not nap during the day, as it does not refresh him. He has not been evaluated for sleep disorders. Upon further questioning, the patient admits that his short-term memory is getting worse, and he is noticing worsening performance at work. He has been having daily occipital headaches, described as dull and mild, around 2-3/10 severity. His vision remains unchanged, and he recently had a normal eye examination.

Which of the following steps would be indicated next?

• Diagnose CFS and begin treatment
• Order neurological testing
• Order sinus computed tomography scan
• Refer patient to a sleep specialist

Case #2 continued: The patient undergoes polysomnography and is diagnosed with sleep apnea. Two months of treatment with continuous positive airway pressure (CPAP) have improved but not resolved symptoms like exhaustion, cognitive problems, and headaches that could have been caused by the sleep disorder, and the patient still awakens from sleep unrefreshed. Recommended laboratory screening tests have been completed, and no other illness that explains the symptoms was revealed.
Which of the following management techniques are you most likely to suggest as indicated now?

• Give the CPAP more time to work
• Discontinue treating the sleep disorder
• Diagnose CFS and begin treatment, while continuing to treat the sleep disorder
• Refer patient back to the sleep specialist to look for other underlying causes of the sleep dysfunction

Case #3: An 18-year-old woman presents to the clinic with several symptoms. She reports frequent episodes of pharyngitis over the past 4 months, almost monthly. The patient also notes that she has been progressively fatigued and irritable over the past 9 months. She sleeps 9-10 hours daily but does not awaken feeling rested. In addition, the patient reports significant pain, including myalgias and new onset of severe headache bitemporally. She reports that she is drinking significant amounts of caffeine in order to function at college, but it only helps somewhat. She indicates that her grades have slipped significantly over the past semester, and she is having trouble concentrating and remembering things covered in class. She is experiencing trouble not only keeping up with her academics, but with her social life and extracurricular activities.

If you diagnose the patient with CFS, which of the following would be an appropriate initial approach for her complaints of pain?

• A low dose of opiates 2-3 times a day
• A thorough pain assessment to determine the nature of the myalgias and headaches
• A hypnotic at bedtime
• Acupuncture

Which of the following management techniques do you recommend as the most important for this college student to focus on early in the intervention process?

• Cognitive behavioral therapy
• Diet and nutrition
• Pacing activities and avoiding overexertion
• Sleep hygiene

Case #3 continued: Seven months into the treatment process, the patient, now 19, presents with significant symptom exacerbation. When asked to prioritize symptoms in decreasing order of their impact, she reports that fatigue is worst, then sleep problems, cognitive dysfunction, pain, and sore throat. Upon questioning, it is clear that the fatigue she is experiencing is postexertional in nature, following both physical and mental activities. She admits that moderating her activity has been challenging because she needs to keep her grades up and she doesn't want to drop out of the band she plays in on weekends or skip activities with her friends and "miss out on what college is all about." She is engaged in a constant "push-crash cycle," and her illness is worsening.
Which of the following would most help your patient at this point in her illness?

• Advise patient to take a year off school to recover
• Refer patient for a thorough psychiatric evaluation
• Increase dosage of medications she is taking to manage symptoms
• Develop a written activity management plan that includes dropping 1-2 classes, quitting her band, and decreasing other social activities by 50% to allow more time for rest

Approximately how many patients do you see each week?

 

[Cort]

The Answers are......

Which of the following best differentiates CFS from depression in this patient?

Your Colleagues Responded:

Postexertional fatigue Correct Answer 80%
Unrefreshing sleep 10%
Declining performance at work 2%
Crying spells 7%

Which of the following will best help the patient maintain her functionality?

Your Colleagues Responded:

Aggressive symptom management Correct Answer 73%
A rigorous exercise program 4%
A combination of antidepressants and anxiolytics 22%
The patient should apply for disability 1%

Which of the following steps would be indicated next?

Your Colleagues Responded:
Diagnose CFS and begin treatment 11%
Order neurological testing 12%
Order sinus computed tomography scan 3%
Refer patient to a sleep specialist Correct Answer 74%

Which of the following management techniques are you most likely to suggest as indicated now?

Your Colleagues Responded:
Give the CPAP more time to work 3%
Discontinue treating the sleep disorder 1%
Diagnose CFS and begin treatment, while continuing to treat the sleep disorder Correct Answer 85%
Refer patient back to the sleep specialist to look for other underlying causes of the sleep dysfunction 11%

If you diagnose the patient with CFS, which of the following would be an appropriate initial approach for her complaints of pain?

Your Colleagues Responded:
A low dose of opiates 2-3 times a day 6%
A thorough pain assessment to determine the nature of the myalgias and headaches Correct Answer 85%
A hypnotic at bedtime 6%
Acupuncture 3%

Which of the following management techniques do you recommend as the most important for this college student to focus on early in the intervention process?

Your Colleagues Responded:
Cognitive behavioral therapy 11%
Diet and nutrition 10%
Pacing activities and avoiding overexertion Correct Answer 69%
Sleep hygiene 9%
Which of the following would most help your patient at this point in her illness?

Your Colleagues Responded:

Advise patient to take a year off school to recover 2%
Refer patient for a thorough psychiatric evaluation 14%
Increase dosage of medications she is taking to manage symptoms 11%
Develop a written activity management plan that includes dropping 1-2 classes, quitting her band, and decreasing other social activities by 50% to allow more time for rest Correct Answer 74%

Most of them got the right answers.

 

[Cort]

The CME credits for the 'new' CAA CME programme have expired. But take heart, the CDC renewed the CME credits for its course authored by Reeves, Jones, McCleary, et al. through 2012. No physician is going to do a CME for no credit so doctors are back to studying the old POS.

I'm assuming CAA is able to get it renewed as CDC did theirs (and you can do this for law CLEs) and is just out to lunch as usual. Is it appropriate that we have to babysit someone paid $187K to help us?

I believe they have to pay to get it renewed....The CDC's program is on their site. The CAA's is on Medscape. It may be different. Maybe you should check with Jennie to see who's out to lunch here.

 

[gracenote]

Chronic Fatigue Syndrome: From Diagnosis to Management

You can print out the entire course. It is 38 pages long.

I don't feel like I can comment until I've had a chance to look over the whole document. But the reference list itself raises questions in my mind. It contains a lot of familiar names, and includes many research studies that I think are of questionable value. Take a look.

References

1. Nisenbaum R, Jones JF, Unger ER, Reyes M, Reeves WC. A population based study of the clinical course of chronic fatigue syndrome. Health Qual Life Outcomes. 2003;1:49.

2. Buchwald D, Pearlman T, Umali J, Schmaling K, Katon W. Functional status in patients with chronic fatigue syndrome. Am J Med. 1996;101:364-370.

3. Christodoulou C, DeLuca J, Lange G, et al. Relation between neuropsychological impairment and functional disability in patients with chronic fatigue syndrome. J Neurol Neurosurg Psychiatr. 1998;64:431-434.

4. Reeves WC, Jones JF, Maloney E, et al. Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Popul Health Metr. 2007;5:5.

5. Kennedy CL, Song S, Johnson D, Torres S. Chronic fatigue syndrome: occupation, medical utilization, and subtypes in a community-based sample. J Nerv Ment Dis. 2000;188:568-576.

6. Reyes M, Nisenbaum R, Hoaglin DC, et al. Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Intern Med. 2003;163:1530-1536.

7. Jason LA, Benton MC, Valentine L, Johnson A, Torres-Harding S. The economic impact of ME/CFS; individual and societal costs. Dyn Med. 2008;7:6.

8. Jones JF, Nisenbaum R, Solomon L, Reyes M, Reeves WC. Chronic fatigue syndrome and other fatiguing illnesses in adolescents: a population based study. J Adolesc Health. 2004;35:34-40.

9. Johnson SK, DeLuca J, Nateslon BH. Chronic fatigue syndrome: reviewing the research findings. Ann Behav Med. 1999;21:258-271.

10. Moss-Morris R, Petrie KJ. Discriminating between chronic fatigue syndrome and depression: a cognitive analysis. Psychol Med. 2001;31:469-479.

11. Lapp CW. Differentiating CFS from depression. CFS Res Rev. 2006;7:4-7.

12. Erdman KM. How biological abnormalities separate CFS from depression. JAAPA. 2008;21:19-23.

13. Bowen J, Pheby D, Charlett A, McNulty C. Chronic fatigue syndrome: a survey of GP's attitudes and knowledge. Fam Pract. 2005;22:389-393.

14. Harmon M. Developing an individualized treatment plan for chronic fatigue syndrome. CFS Res Rev. 2007;8:4-7.

15. Shlaes JL, Jason LA, Ferrari JR. The development of the Chronic Fatigue Syndrome Attitudes Test: a psychometric analysis. Eval Health Prof. 1999;22:442-465.

16. Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med (Lond). 2005;55:20-31.

17. Reyes M, Gary HE Jr, Dobbins JG, et al. Surveillance for chronic fatigue syndrome -- four U.S. cities, September 1989 through August 1993. MMWR CDC Surveill Summ. 1997;46:1-13.

18. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994;121:953-959.

19. Reeves WC, Wagner D, Nisenbaum R, et al. Chronic fatigue syndrome -- a clinically empirical approach to its definition and study. BMC Med. 2005;15:19.

20. Dobbins JG, Randall B, Reyes M, Steele L, Livens EA, Reeves WC. Prevalence of chronic fatiguing illness among adolescents in the United States. J Chronic Fatigue Syndr. 1997;3:15-28.

21. Jason LA, Jordan K, Miike T, et al. A pediatric case definition for myalgic encephalomyelitis and chronic fatigue syndrome. J Chronic Fatigue Syndr. 2006;13:1-44.

22. Nisenbaum R, Reyes M, Unger ER, Reeves WC. Factor analysis of symptoms among subjects with unexplained chronic fatigue: what can we learn about chronic fatigue syndrome? J Psychosom Res. 2004;56:171-178.

23. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30:473-483.

24. Smets EM, Garssen B, Bonke B, De Haes JC. The Multidimensional Fatigue Inventory (MFI) psychometric qualities of an instrument to assess fatigue. J Psychosom Res. 1995;39:315-325.

25. Melsack R. The McGill Pain Questionnaire: major properties and scoring methods. Pain. 1975;1:277-299.

26. Bell DS. The Doctor's Guide to Chronic Fatigue Syndrome. Reading, Mass: Addison-Wesley Publishing Co; 1995:122-123.

27. Lapp C. Subjective Functional Capacity Assessment Scale. Hunter-Hopkins Center, Charlotte, NC. Available at the CFIDS Association of America, e-mail meded@cfids.org.

28. Buysse DJ, Reynolds CF 3rd, Monk TH, Berman SR, Kupfer DJ. The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Psychiatry Res. 1989;28:193-213.

29. Wagner D, Nisenbaum R, Heim C, Jones JF, Unger ER, Reeves WC. Psychometric properties of the CDC Symptom Inventory for assessment of chronic fatigue syndrome. J Mental Health. 2005;14:213-221.

30. Aaron LA, Buchwald D. A review of the evidence of overlap among unexplained clinical conditions. Ann Intern Med. 2001;134:868-881.

31. Cullen W, Kearney Y, Bury G. Prevalence of fatigue in general practice. Ir J Med Sci. 2002;171:10-12.

32. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361-370.

33. Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry. 1961;4:561-71.

34. Zung W. A self-rating depression scale. Arch Gen Psychiatry. 1965;12:63-70.

35. Lutgendorf SK, Antoni MH, Ironson G, et al. Physical symptoms of chronic fatigue syndrome are exacerbated by the stress of Hurricane Andrew. Psychosom Med. 1995;57:310-323.

36. Alonzo AA. The experience of chronic illness and posttraumatic stress disorder. Soc Sci Med. 2000;50:1475-1484.

37. Klausner E, Koenigsberg H, Skolnick N, Chung H. Perceived familial criticism and glucose control in insulin-dependent diabetes mellitus. Int J Ment Health. 1995;42:64-75.

38. Cohen S. Psychosocial models of the role of social support in the etiology of physical disease. Health Psychol. 1998;7:262-297.

39.Thoits PA. Social support as coping assistance. J Consult Clin Psychol. 1986;54:416-423.

40. Umberson D. Gender, marital status and the social control of health behavior. Soc Sci Med. 1992;34:907-917.

41. Taggart HM, Arslanian CL, Bae S, Singh K. Effects of T'ai Chi exercise on fibromyalgia symptoms and health-related quality of life. Orthop Nurs. 2003;22:353-360.

42. Afari N, Buchwald D. Chronic fatigue syndrome: a review. Am J Psychiatry. 2003;160:221-236.

43. Friedberg F, Leung DW, Quick J. Do support groups help people with CFS and FM? A comparison of active and inactive members. J Rheumatol. 2005;32:2416-2420.

44. Evengard B, Klimas N. Chronic fatigue syndrome: probable pathogenesis and possible treatments. Drugs. 2002;62:2433-2446.

45. Grant JE, Veldee MS, Buchwald D. Analysis of dietary intake and selected nutrient concentrations in patients with chronic fatigue syndrome. J Am Diet Assoc. 1996;96:383-386.

46. Werbach MR. Nutritional strategies for treating chronic fatigue syndrome. Altern Med Rev. 2000;5:93-108.

47. Jones JF, Nisenbaum R, Reeves WC. Medication use by persons with chronic fatigue syndrome: results of a randomized telephone survey in Wichita, Kansas. Health Qual Life Outcomes. 2003;1:74.

48. Unger ER, Nisenbaum R, Moldofsky H, et al. Sleep assessment in a population-based study of chronic fatigue syndrome. BMC Neurol. 2004;4:6.

49. Vercoulen JH, Swanink CM, Fennis JF, Galama JM, van der Meer JW, Bleijenberg G. Dimensional assessment of chronic fatigue syndrome. J Psychosom Res. 1994;38:383-392.

50. Bell DS. Sleep in CFS. Lyndonvillle News. 2005;2:1-9.

51. Harmon M. Clinical care for chronic fatigue syndrome. CFIDS Chronicle. 2006;19:48-59.

52. Bateman L. Pearls of wisdom from a CFS physician. CFIDS Chronicle. 2008;21:24-27.

53. Spanos A. What a pain. CFIDS Chronicle. 2005;18:10-13.

54. Spanos A. Treating the pain in CFIDS: effective pain relief is hard to get. CFIDS Chronicle. 1998;11:9-12.

55. Rowe PC, Bou-Holaigah I, Kan JS, Calkins H. Is neurally mediated hypotension an unrecognised cause of chronic fatigue? Lancet. 1995;345:623-624.

56. Freeman R, Komaroff AL. Does the chronic fatigue syndrome involve the autonomic nervous system? Am J Med. 1997;102:357-364.

57. Stewart JM, Gewitz MH, Weldon A, Arlievsky N, Li K, Munoz J. Orthostatic intolerance in adolescent chronic fatigue syndrome. Pediatrics. 1999;103:116-121.

58. Tiersky L, DeLuca J, Hill N, et al. Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Appl Neuropsychol. 2001;8:41-50.

59. de Lange FP, Kalkman JS, Bleijenberg G, et al. Neural correlates of the chronic fatigue syndrome -- an fMRI study. Brain. 2004;127:1948-1957.

60. DeLuca J, Johnson SK, Ellis SP, Natelson BH. Cognitive functioning is impaired in patients with chronic fatigue syndrome devoid of psychiatric disease. J Neurol Neurosurg Psychiatry. 1997;62:151-155.

61. Taylor RR, Kielhofner G. An occupational therapy approach to persons with chronic fatigue syndrome: part two, assessment and intervention. Occup Ther Health Care. 2003;17:63-87.

62. Krupp LB, Jandorf L, Coyle PK, Mendelson WB. Sleep disturbance in chronic fatigue syndrome. J Psychsom Res. 1993;37:325-331.

63. Fossey M, Libman E, Bailes S, et al. Sleep quality and psychological adjustment in CFS. J Behav Med. 2004;27:581-605.

64. Rimes KA, Chalder T. Treatments for chronic fatigue syndrome. Occup Med (Lond). 2005;55:32-39.

65. Whiting P, Bagnall A, Sowden A, Cornell J, Mulrow C, Ramirez G. Interventions for the treatment and management of chronic fatigue syndrome. JAMA. 2001;286:1360-1368.

66. Komaroff AL, Buchwald D. Symptoms and signs of chronic fatigue syndrome. Rev Infect Dis. 1991;13(suppl 1)S8-S11.

67. Bailey SP. Chronic fatigue syndrome. In: ACSM's Guidelines for Exercise Testing and Prescription. Philadelphia, Pa: Lippincott Williams & Wilkins; 2003:186-191.

68. McCully KK, Sisto SA, Natelson BH. Use of exercise for treatment of chronic fatigue syndrome. Sports Med. 1996;21:35-48.

69. Lloyd AR. To exercise or not to exercise in chronic fatigue syndrome? No longer a question. Med J Aust. 2004;180:437-438.

70. Goshorn RK. Chronic fatigue syndrome: a review for clinicians. Semin Neurol. 1998;18:237-242.

71. Emms TM, Roberts TK, Butt HL, Buttfield I, McGregor NR, Dunstan, RH. Food intolerance as a co-morbidity in chronic fatigue syndrome [Abstract No. 15]. Program and abstracts of the Fifth International Research, Clinical and Patient Conference; American Association for Chronic Fatigue Syndrome; January 26-29, 2001; Seattle, Washington.

72. Logan AC, Bested AC. Chronic fatigue syndrome; an assessment of dietary/herbal intake by patients in a clinical setting. Program and abstracts of the Sixth International Conference on Chronic Fatigue Syndrome, Fibromyalgia and Related Illnesses; January 30-February2, 2003; Chantilly, Virginia.

73. Verrillo EF, Gellman, LM. Chronic Fatigue Syndrome: A Treatment Guide. New York, NY: St. Martin's Griffin; 1997.

74. Wallman, KE, Morton AR, Goodman C, Grove R, Guilfoyle AM. Randomized controlled trial of graded exercise in chronic fatigue syndrome. Med J Aust. 2004;180:444-448.

75. Taylor RR, Friedberg F, Jason LA. A Clinician's Guide to Controversial Illnesses: Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities. Sarasota, Fl: Professional Resource Press; 2001:63-86.

76. Bleijenberg G, Prins J, Bazelmans E. Cognitive-behavioral therapies. In: Jason LA, Fennell PA, Taylor RR, eds. Handbook of Chronic Fatigue Syndrome. 1st ed. Hoboken, NJ: John Wiley and Sons; 2003:493-526.

77. Pesek JR, Jason LA, Taylor RR. An empirical investigation of the envelope theory. J Human Behav Soc Environ. 2000;3:59-77.

78. Stevens S. A realistic approach to exercise and exercise rehabilitation in CFS. Program and abstracts of the Advances in Understanding and Treating CFS and FM Conference; May 15, 2004; Salt Lake City, Utah.

79. Fulcher KY, White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ. 1997;314:1647-1652.

80. VanNess JM, Snell CR, Trayer DR, Dempsey L, Stevens SR. Subclassifying chronic fatigue syndrome through exercise testing. Med Sci Sports Exerc. 2003;35:908-913.

81. Kopp WJ, Lyden A, Berlin AA, et al. Ambulatory monitoring of physical activity and symptoms in fibromyalgia and chronic fatigue syndrome. Arthritis Rheum. 2005;52:296-303.

82. Deale A, Husain K, Chalder T, Wessely S. Long-term outcome of cognitive behavior therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study. Am J Psychiatry. 2001;158:2038-2042.

83. Reid S, Chalder T, Cleare A, Hotopf M, Wessely S. Extracts from clinical evidence: chronic fatigue syndrome. BMJ. 2000;320:292-296.

84. Prins JB, Bleijenberg G, Bazelmans E, et al. Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial. Lancet. 2001;357:841-847.

85. Edmonds M, McGuire H, Price J. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2004;(3):CD003200.

86. Natelson BH. Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong. Hoboken, NJ: John Wiley & Sons; 2007.

 

[Stuart]

CAA Rubberstamp on Reeves "Empiric" Definition in Continuing Education

Chronic Fatigue Syndrome > Continuing Education > Continuing Education Portal > A Primer for Allied Health Professionals


A Primer for Allied Health Professionals, Course WB3151

Faculty and Credentials

This educational module is based upon curriculum content from the CDC primary care provider education project and experts in CFS and allied health also contributed to the development of the programs content.




The following individuals are considered content experts for this activity:

• James Jones, MD, Research Medical Officer, Centers for Disease Control and Prevention
• Teresa Lupton, RN, BSS, Coordinator for Medical Opportunities, CFIDS Association of America
• Kimbery McCleary, BA, CEO, CFIDS Association of America
• William Reeves, MD, Branch Chief, Centers for Disease Control and Prevention
• Vicki Walker, BA, Manager, Research and Public Policy, CFIDS Association of America (formerly)

Chapter Two, Course WB3151

CFS Case Definition

The International Working Group Case Definition of CFS (Fukuda et al., 1994) and clarifications published in 2003 (Reeves et al.) provide the current international standard for diagnosis of CFS in research studies and provide appropriate guidelines for clinical diagnosis. CDC has developed an empirical case definition that addresses diagnostic and assessment needs in both the research and clinical arenas (Reeves et al., 2005).



Origin Date: July 11, 2006

Renewal Date: July 1, 2009

Expiration Date: June 30, 2012


http://www.cdc.gov/cfs/cme/wb3151/

:worried:

You can't claim the CDC Continuing Education is has nothing to do with the CAA. The CAA was hand in glove.

 

[Stuart]

Chronic Fatigue Syndrome: From Diagnosis to Management

You can print out the entire course. It is 38 pages long.

I don't feel like I can comment until I've had a chance to look over the whole document. But the reference list itself raises questions in my mind. It contains a lot of familiar names, and includes many research studies that I think are of questionable value. Take a look.

Gracenote, you beat me to it!

 

[justinreilly]

Get rid of the misleading "can's" and "may's"

From CAA CME:

Worsening of symptoms following even minimal exertion is a hallmark of the illness.[66] Clinicians should be aware that advising patients who have CFS to engage in vigorous aerobic exercise and "go for the burn" or "release those endorphins" can be detrimental.[67] Most CFS patients cannot tolerate traditional exercise routines aimed at optimizing aerobic capacity. Instead of helping patients, such vigorous cardiovascular exercise can provoke postexertional malaise, a hallmark of CFS that is defined as exacerbation of fatigue and other symptoms following physical or mental exertion. Even worse, this kind of exercise can precipitate a full-scale relapse that lasts for days or weeks.[68][/B]

Some of this CME is very good. Some of it is very bad.

And a lot of it is misleading. That is, a lot of this stuff that you (and even teej) cite as fine or good, I have a problem with. It's the constant use of 'can' and 'may' that Maarten mentioned. I see these words used constantly by every ME misinformer out there to cast a false sense of uncertainty on the science.

One small example is the use of 'most' and 'can' here:

Most CFS patients cannot tolerate traditional exercise routines aimed at optimizing aerobic capacity. Instead of helping patients, such vigorous cardiovascular exercise can provoke postexertional malaise...

The use of 'most' implies that some 'CFS' patients can 'tolerate traditional exercise routines aimed at optimizing aerobic capacity.' Optimizing aerobic capacity for me prior to my onset 7 years ago would mean running about four miles a day. Do you know any ME patients who can run everyday?

The use of 'can' gives the impression that a 'vigorous' aerobic training regimen might cause 'malaise'. This is misleading because we know vigorous exercise will always cause PEM.

This passage should instead read: "ME/CFIDS patients cannot tolerate traditional exercise routines aimed at optimizing aerobic capacity. Instead of helping patients, such vigorous cardiovascular exercise provokes postexertional morbidity."

Just leave out all the inappropriate "most's", "can's" and "may's". All the inaccurate hedging hurts us.

This may seem minor to some people, but if you add up all these misleading statements in each paper, it sums up to leaving the reader with a sense that the disease is less serious than it really is and that there is much more uncertainty to the science than there really is.

 

[justinreilly]

CAA Rubberstamp on Reeves "Empiric" Definition in Continuing Education

The International Working Group Case Definition of CFS (Fukuda et al., 1994) and clarifications published in 2003 (Reeves et al.) provide the current international standard for diagnosis of CFS in research studies and provide appropriate guidelines for clinical diagnosis. CDC has developed an empirical case definition that addresses diagnostic and assessment needs in both the research and clinical arenas (Reeves et al., 2005).

You can't claim the CDC Continuing Education is has nothing to do with the CAA. The CAA was hand in glove.

Nice to see CAA still telling all the doctors the Reeves definition is the one they need to use clinically and in research. That's what CAA's failure to take its name off this CME means: they, and any doctor who reads this CME, still consider CAA as the proud authors of this harmful misinfo.

They have to at least get their names off of this doc and I'm not holding my breath.

 

[justinreilly]

CAA Revenue breakdown

2008 Sources of Revenue

Excluding government grants for specific projects

Public Support-----------------$ 1,407,911
Membership Dues------------- ----118,672
Corporate/Foundation Gifts---------37,702
Interest & Other---------------------10,360
Material Orders-----------------------7,338
---------------------------------$ 1,581,983

plus about $340,000 in government grants


Jennie-
As a heads up, if there isn't some sort of significant movement on 'change' front in a couple of months, I plan on asking you for names and contact info for significant donors.

 

[starryeyes]

Gracenote, you beat me to it!

That list is so long! Well, I guess that settles the matter. Many people wrote it!

 

[Dr. Yes]

Those are the doctors findings. They're not saying that curing kinesophobia is going to cure CFS! or that CFS is kinesiphobia (Imagine what a different document it would be). They're saying that for some patients they should be encouraged to move more. Nowhere in this document does it say that moving more - getting more exercise - is going to cure CFS. Hence the short focus on kinesphobia is only designed to improve quality of life in some patients.

Cort, do you really believe this? i.e., Do you think that some of us have this phobia?

And where exactly in the medical literature did they find a valid scientific study demonstrating "kinesophobia" as a limiting factor for any ME/CFS patients? Not that I believe this claim should even be dignified by a response from anyone on this forum, but just in case someone was wondering, here's one of the 'classics' (the full text uses the term 'kinesiophobia'):

Is the chronic fatigue syndrome an exercise phobia? A case control study
Journal of Psychosomatic Research, Volume 58, Issue 4, Pages 367-373
A.Gallagher, A.Coldrick, B.Hedge, W.Weir, P.White
(Abstract)

Objective
The aim of this study was to test whether patients with chronic fatigue syndrome (CFS) have an exercise phobia, by measuring anxiety-related physiological and psychological reactions to ordinary activity and exercise.

Methods
Patients and healthy but sedentary controls were assessed over 8 h of an ordinary day, and before, during and after an incremental exercise test on a motorised treadmill. To avoid confounding effects, those with a comorbid psychiatric disorder were excluded. Heart rate, galvanic skin resistance (GSR) and the amount of activity undertaken were measured, along with state and trait measures of anxiety.

Results
Patients with CFS were more fatigued and sleep disturbed than were the controls and noted greater effort during the exercise test. No statistically significant differences were found in either heart rate or GSR both during a normal day and before, during and after the exercise test. Patients with CFS were more symptomatically anxious at all times, but this did not increase with exercise.

Conclusion
The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia.

The fact that this... 'experiment' has more holes in it than a piece of swiss cheese that's been shot by an army of mice with BB guns is irrelevant. The point is, some very 'important' folks who would claim we display kinesophobia, namely Peter White and company, couldn't find it in CFS patients (no matter what criteria they used to define CFS, and no matter how broadly they defined kinesiophobia.).

Speaking of defining kinesiophobia... from Nijs, Oosterwijck and Meeus: "Myalgic encephalomyeltitis / chronic fatigue syndrome: Rehabilitation through activity management, stress management and exercise therapy":

As explained above, too vigorous exercise or physical activity frequently triggers post-exertional malaise in people with ME/CFS. Hence, it seems natural for ME/CFS patients to develop fear of movement (Figure 1). Kinesiophobia, a specific kind of fear-avoidance behavior, is defined as “an excessive, irrational, and debilitating fear of physical movement and activity resulting from a feeling of vulnerability to painful injury or reinjury” (Kori et al. 1990).

I didn't know trying to avoid postexertional malaise naturally seguewayed into an irrational fear, or phobia, of activity.

That's my take. I don't see how a doctor could read this and come away with any other idea.

Cort, please come to New York. I'd like to introduce you to most of the doctors I've seen in the last 17 years!

And from the conversations I've had with others on this forum, I'd say you could make many, many more stops too, if you wanted to meet more doctors like that.

 

[Stuart]

That list is so long! Well, I guess that settles the matter. Many people wrote it!

teej, when writing up a document the references are what you read that agrees with the points you are making, there would be an entirely different CME if we wrote it by reviewing the best of the literature that supports the patient experience and makes use of the Canadian definition instead of Reeves. That the list contains what it does, and what it doesn't, is telling.