Thread by @TomKindlon

[Thread]
"#MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Essentials of Diagnosis & Management" (from US ME/#CFS Clinician Coalition)

mayoclinicproceedings.org/article/S0025-…

"21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by #MECFS"

1/

2/
"the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/#CFS

#ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE #MEeps

3/
"There are many steps that clinicians can take to improve the health, function, & quality of life of those with ME/#CFS, including those in whom #MECFS develops after COVID-19"

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #Covidlonghaulers #PostCovidSyndrome

4/
"Even after diagnosis, [#MEcfs] patients struggle to obtain appropriate care & have often been prescribed treatments, such as cognitive-behavioral therapy (CBT) & graded exercise therapy (GET), that could worsen their condition"

#MyalgicEncephalomyelitis #CFS #MyalgicE #PwME

5/
"There are many steps a clinician can take to improve the health, function, and quality of life of these patients. Even if they do not go on to develop ME/#CFS, some patients with #postCOVID conditions may also benefit from approaches such as pacing"

#PostViralSyndrome #PVFS

6/
"Historically, premorbid mood disorders, personality issues & childhood adversity have been linked to the development of ME/#CFS. However,study limitations, such as use of overly broad criteria that included people with depression but not #MECFS, could confound those findings"

7/
"Mental health after the onset of ME/#CFS is similar to that in other medical conditions & better than that seen in depression. The prevalence of depression & anxiety in #MECFS is similar to that in other disabling, chronic illnesses"

#ChronicFatigueSyndrome #MyalgicE #PwME

8/
#MyalgicEncephalomyelitis/#chronicfatiguesyndrome substantially impairs occupational, educational, social, & personal activities. The degree of impairment can exceed that of rheumatoid arthritis, multiple sclerosis, depression, heart disease, cancer, & lung disease"
#CFS #PwME

9/
"The hallmark symptom of PEM [post-exertional malaise] is an exacerbation of some or all of a patient’s symptoms and a further reduction in functioning after physical, cognitive, orthostatic, emotional, or sensory challenges that were previously tolerated"

#MEcfs #CFS #PwME

10/
"Notably, although postexercise fatigue and musculoskeletal pain are common in healthy people and other medical conditions (eg, osteoarthritis), (contd.)"
(Part 1 of 2)

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(Part 2 of 2)
"(Contd.) the postexertional worsening of function & the constellation of symptoms (such as sleep, memory, concentration, influenza-like feelings [eg, sore throat], & mood) seen in ME/#CFS are distinctive"

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs

12/
"In the past, some physicians&scientists speculated that these exertional limitations were due to physical deconditioning or an irrational fear of activity.While chronically inactive people are likely to be deconditioned,deconditioning does not explain the symptoms of #MECFS"

13/
"Instead [of deconditioning], evidence suggests that problems generating and using the main energy molecule, adenosine triphosphate (ATP), may be a fundamental driver of ME/CFS."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps

14/
"For example, when sedentary but healthy people or people affected by a number of other chronic illnesses are asked to exercise to their maximal ability on 2 consecutive days, energy test results do not change significantly from one day to the next (contd.)"
(part 1 of 3)

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"(Contd.) [Sedentary people] may not use oxygen as efficiently as healthy, physically fit people,but their energy efficiency remains the same on repeated testing. In contrast,in #MECFS, the ability to generate energy deteriorates on a repeated test the 2nd day."
(part 2 of 3)

16/
"(Contd.) "For instance, [in people with ME/CFS] the work rate at ventilatory threshold can drop significantly, with 1 study reporting a drop of up to 55%"
(part 3 of 3)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps

17/
"Compared with patients moderately affected with #MECFS, severely affected patients exhibited impairment in the glycolytic system as well...Damage to more than 1 energy generation system may account for why severely affected patients are often so limited"
#SevereME #SevereCFS

18/
"Patients [with #MECFS] experience various sleep disturbances, such as problems in falling or staying asleep. However, even when these problems are treated, most patients remain tired or sick on awakening. (contd.)"
(part 1 of 3)
#MyalgicEncephalomyelitis #CFS #MyalgicE #PwME

19/
"(contd.) Reduced heart rate variability, controlled by the autonomic nervous system, is linked to unrefreshing sleep in ME/CFS and other conditions."

(part 2 of 3)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps

20/
"(contd.) Furthermore, studies have reported that nocturnal parasympathetic activity is decreased relative to sympathetic activity in ME/CFS, the inverse of what should be occurring during rest."

(part 3 of 3)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS

21/
"Decreased information processing speed is the most commonly found cognitive deficit in #MECFS. Other abnormalities include decreased reaction time, working memory, & attention. These deficits are not due to poor effort, insomnia, or mood disorders"
(part 1 of 3)

#CFS #PwME

22/
"(contd.) Defects become particularly prominent when patients face deadlines, unrelenting demands, and multiple simultaneous tasks. Motor speed, verbal abilities, & global reasoning remain intact."

(part 2 of 3)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS

23/
"(contd.) Brain studies have found brain inflammation and reductions in white matter and possibly in gray matter. Neuroinflammation is correlated with cognitive impairment and impaired connectivity across various regions of the brain."

(part 3 of 3)

#MEcfs #CFS #MyalgicE

24/
"In up to 95% of those with #MECFS, an immobile, upright position (eg prolonged standing or sitting) will cause or worsen symptoms such as lightheadedness, nausea, fatigue, palpitations & cognitive impairment. Assumption of a sitting or supine position can alleviate symptoms"

25/
"This phenomenon is called orthostatic intolerance and includes orthostatic hypotension, postural orthostatic tachycardia syndrome, and neurally mediated hypotension."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps

26/
"Objective physiologic abnormalities [of #OrthostaticIntolerance in #MEcfs] include the following:

- Abnormal heart rate and blood pressure changes after passive standing & tilt table tests

- A 25% drop in cerebral blood flow on standing or sitting up"

#CFS #MyalgicE #PwME

27/
"[Objective physiologic abnormalities of #OrthostaticIntolerance in #MEcfs include] decreases in stroke volume index and cardiac index that are not correlated with activity levels, contradicting theories that deconditioning explains ME/#CFS"

#ChronicFatigueSyndrome #MyalgicE

28/
"[Objective physiologic abnormalities of #OrthostaticIntolerance in #MEcfs include] Orthostatic hypocapnia & a decrease in blood volume which can further aggravate symptoms caused by abnormalities in the autonomic nervous system"

#ChronicFatigueSyndrome #CFS #MyalgicE #PwME

29/
Patients "may experience other symptoms but not link them to their illness or have difficulty describing them.Consequently,it is important for clinicians to ask explicitly about the symptoms composing the criteria for #MECFS.Examples of questions to ask are listed in Table 1"

30/
"The key symptom of PEM is often not mentioned spontaneously as [#MEcfs] patients may not be familiar with the concept.The nature & severity of PEM symptoms, the degree of reduction in function, & PEM’s time course can vary from episode to episode & with the type of activity"

31/
"#orthostaticintolerance commonly is manifested as lightheadedness, palpitations, or syncope. However, patients with ME/#CFS often experience subtler symptoms, such as feeling sick, nauseous, tired, or confused during periods of sitting or standing still"

#MEcfs #PwME #OI

32/
"Inquiring about symptoms during aggravating (eg, long lines, hot weather) and alleviating situations (eg, lying, sitting down) is helpful."

#orthostaticintolerance #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps

33/
"Pts may [be] diagnosed w/ anxiety as some symptoms (eg lightheadedness, a “racing heart”) are shared...Accurate identification of orthostatic intolerance avoids misdiagnosis w/ a psychiatric disorder&ensures its appropriate management,which is different from that of anxiety"

34/
"Some patients are so affected by cognitive dysfunction that they cannot converse, read a book, follow directions, or remember what was just said"

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps

35/
"Other [#MEcfs] patients function reasonably well for brief periods but suffer from cognitive fatigue or reduced or slowed abilities under time or other pressures. Many patients stop or restrict driving because of these issues."

#ChronicFatigueSyndrome #CFS #MyalgicE #PwME

36/
"The most severely ill [#MEcfs] patients are bedbound and unlikely to be seen in the clinician’s office but may be seen in emergency departments and hospitals during a crisis."

#SevereME #SevereMECFS #SevereCFS #VerySevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

37/
"Whether in the hospital or at home, the very severely ill require individualized care that accounts for their severe energy limitations and sensory sensitivities. The recent expansion of telemedicine may facilitate the provision of care for all ME/#CFS patients"
#MEcfs #PwME

38/
"Repeated cardiopulmonary exercise testing [can demonstrate]an inability to repeat or to sustain physical activities...these tests involve a challenge that may induce severe or longlasting PEM.This risk may
be warranted for disability evaluations but[not recommended for all]"

39/
"fatigue and a reduction in activities can be seen in both
ME/CFS and depression or anxiety; but PEM [post-exertional malaise] and orthostatic intolerance are not characteristic of mood disorders, whereas feelings of worthlessness are typically absent in #MECFS"

#PwME #CFS

40/
"In general,PEM [postexertional malaise]is a distinctive feature that can help differentiate ME/#CFS from other diseases.Therapeutic trials may also help;if treatment for the alternative diagnosis completely eliminates a patient’s symptoms,#MECFS is not the correct diagnosis"

41/
"Treating these [comorbid] conditions will not cure #MECFS but can reduce symptom burden & improve quality of life. Documenting these conditions may also promote appropriate reimbursement by insurance groups & may support a disability claim & access to other needed resources"

42/
"However, GET & CBT [#MEcfs] studies have been widely criticized for their methodology, inadequate tracking of harms, and a disease theory that conflicts with the evidence of multisystem biologic impairment"

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CFS #PwME

43/
"When the [#PACEtrial] data were reanalyzed with the original protocol, improvement decreased by a factor of 3 and recovery rates decreased to 7% for CBT and 4% for GET, not significantly different from controls"

#ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE

44/
"54% to 74% of [#MEcfs] patients have reported experiencing harms after GET [#GradedExerciseTherapy]. Because of these concerns, the US Centers for Disease Control and Prevention & health agencies in some countries have
since removed recommendations for CBT & GET"

#CFS #PwME

45/
"Despite the lack of ME/CFS-specific US Food and Drug Administration approved treatments, health care professionals can greatly reduce a patient’s burden of disease & improve their quality of life. Basic principles of care are outlined below"

#MEcfs #CFS #MyalgicE #PwME

46/
"Validate the [#MEcfs] patient’s illness experience and educate patients, family members, and others (eg, employers, schools). Frequently, patients’ concerns have been dismissed, downplayed, misdiagnosed as depression or anxiety, or labeled as hypochondriasis."

#CFS #PwME

47/
"Almost all patients consider obtaining an ME/CFS diagnosis to be a turning point in their illness, allowing them to better understand, explain, cope with, and find support for their situation."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME

48/
#MEcfs "Patients often need help acquiring handicap placards, work or school accommodations, housing, adequate nutrition, disability benefits, & other necessary resources...provide information, documentation, referrals, equipment, & accommodations to address these needs"
#CFS

49/
"Documenting how symptoms affect function during every appointment can save time in documenting disability later. [#MEcfs] Patients should assist by documenting such information before the visit."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MyalgicE #PwME #MyE

50/
"Resources for work accommodations,118 educational accommodations,119 & disability programs106 are available. [#MEcfs] Patient websites & community support groups may have information about local programs"
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #MyalgicE #PwME

51/
Table 4
Summary of Treatment & Management Approaches [in #MEcfs]:

-Postexertional malaise
-Orthostatic intolerance
-Sleep issues
-Cognitive dysfunction & fatigue
-Immune dysfunction
-Pain
-Gastrointestinal issues

mayoclinicproceedings.org/action/showFul…

#ChronicFatigueSyndrome #CFS #PwME

52/
"Because PEM [post-exertional malaise] is associated with poor energy production & can be instigated by a variety of stimuli (eg, physical/cognitive exertion; emotional, orthostatic, & sensory stressors), patients must carefully plan where & how to spend their limited energy"

53/
"Typically, [pacing means] patients must decrease the total amount of their activities & restrict their exposures to PEM*-inducing stimuli as much as possible"

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps

*post-exertional malaise

54/
"Reducing PEM [post-exertional malaise] can help alleviate fatigue, cognitive defects, sleep disturbances, pain, and other symptoms while helping to avoid repeated post-exertional relapses that can have a long-term impact."

#ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME

55/
"education about pacing, and use of energy-saving/monitoring devices (eg, shower chairs, motorized scooters, pedometers, heart rate monitors) are often beneficial, as are diaries to help patients identify when they are exceeding their limits"

#MEcfs #CFS #MyalgicE #PwME #MyE

56/
"Even with such [energy-saving/monitoring devices] aids, pacing is challenging and some setbacks are inevitable, especially because tolerance for activity can vary from day to day."

#MEcfs #CFS #MyalgicE #PwME #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

57/
"Treatment of comorbidities can positively affect a patient’s quality of life & severity of symptoms. Ensure treatments for comorbidities are also appropriate for #MECFS.For example, whereas exercise may help patients with fibromyalgia,it can make patients with ME/#CFS worse"

58/
"Hopefully, this article has answered some questions surrounding this enigmatic condition...As with many chronic medical conditions, although there is not yet a cure for #MECFS, health care providers are in a unique position to have a positive impact on patients’ lives"

/End

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