Andrew
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Well, if anyone wants to attempt a lay manual, feel free to borrow whatever you want from the pdf in my blog post. Or, if you have any ideas for me to improve what I did, let me know.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Perhaps not exactly the same thing, but I recall the American Journal of Medicine had two opinion pieces giving alternative views:a public debate would be brilliant! If we could get specialists and GPs/PCPs to listen to it, that would be awesome. And social services, the media, etc.
by the bye, have you seen the NIH State of the Knowledge conference? I saw some of it, and there was some of that going on (not too many bad psychs, tho). But I'm not sure how wide the audience was. Can be found here
The biology of chronic fatigue syndrome.
Komaroff AL.
Am J Med. 2000 Feb;108(2):169-71. No abstract available.
Chronic fatigue syndrome: the fundamentals still apply.
Manu P.
Am J Med. 2000 Feb;108(2):172-3. Review. No abstract available.
PMID: 11126312
------http://iacfsme.org/Home/Primer/tabid/509/Default.aspx
Comments and suggestions on the Primer are welcome (To: admin@iacfsme.org
(admin @ iacfsme.org) ; Subject line: Primer comments/questions). As the
field evolves, updates to the Primer will be published at www.iacfsme.org.
--"A future revision of the Primer will consider the public feedback we have
received including (a) concerns about the negative effect of any type of
exercise in severely ill homebound patients; (b) requests for more
information on the potentially positive impact of pleasant activities; and
(c) strong sentiments for wide dissemination of the Primer."
that's a good suggestionI can't remember if it was highlighted but the IACFS/ME website says:
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The IACFS/ME newsletter said:
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So it looks like they should be open to comments and it would be good if people sent in comments. I think a revised version could be useful.
- this suggests there will be progress. At the very least, the wording needs to be clarified that progress is by no means guaranteed."Proceed very slowly with any activity, perhaps starting with range of motion exercises lying down, followed by range of motion with light resistance and then very light aerobic activity."
(Section 6:1 Low Functioning Patients: Special Considerations)
Severely ill patients (functional capacity rating 1-3; Appendix C). Homebound and bedbound patients may benefit from in-home services that provide assisted range-of-motion and strengthening exercises. Exercise lying down should be advised when exercise standing or sitting is poorly tolerated. Initially, interval training exercise should begin with gentle stretching to improve mobility utilizing intervals of 90 seconds or less. The patient should rest between intervals until complete recovery has occurred. Additional intervals can be added when the stretching exercises do not trigger post-exertional symptoms. Then, resistance training can begin (functional capacity rating 4-5) with elastic bands or light weights. As endurance improves, short-duration interval training such as leisurely-paced walking can be added.
(Section 5.4)
Jason, L.A., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, M.G., Donalek, J., Reynolds, N., Brown, M., Weitner, B.B., Rademaker, A., & Papernik, M.(2007).
Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14, 275-296. doi:10.1007/s10880-007-9090-7
<http://www.cfids-cab.org/cfs-inform/CFStreatment/jason.etal07.pdf>
Goudsmit, EM, Shepherd, C., Dancey, CP and Howes, S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009, 18, 1, 26-33.
Paul, L., Wood, L., Behan, W.M.H., & Maclaren, W.M. (1999). Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome. European Journal of Neurology, 6, 63-69.
"This chapter provides recommendations primarily for ambulatory patients who are able to attend office visits. Special considerations are offered in chapter 7 for the perhaps 25% of patients with ME/CFS who are bedridden, house-bound, or wheelchair dependent."
References 68 and 69 are both Fibromyalgia references, so it's slightly misleading."Helpful non-pharmacologic interventions for pain may include 68,69 pacing of activity, physical therapy, stretches, massage, acupuncture, hydrotherapy, chiropractic, yoga, Tai Chi and meditation (re-laxation response). Also consider hot or cold packs, warm baths or balneotherapy, muscle liniments, electrical massagers, TENS (transcutaneous electri-cal nerve stimulation), and rTMS (transcranial magnetic stimulation). " (section 5.3)
I think the advice is good, but not the reason. "Stress" sounds too much like "psychological stress" something that somebody could control with being more relaxed while exams often involve quite intense mental exertion done quickly during the time of exam. Also, in the lead up to exams, people may be pushing themselves to study (mental exertion). So I think the point is good and important to make but it would be good if the reason was clarified a bit (the existence of the effects of mental exertion have already been acknowledged elsewhere so it wouldn't have to be long). It would be good if it was also mentioned that rest periods/extra time should be considered for patients as exams carry a big risk of flare-ups and relapse."If the patient is subject to stress-related symptom flare-ups, it may be desirable to limit academic examinations to those that are deemed essential." (section 6.4)
"Secondary anxiety can arise with the crisis of illness onset and persist as the illness affects the ability to work and family relationships. Secondary anxiety may be distinguished from generalized anxiety dis-order (GAD). GAD is characterized by excessive worry and assorted physical symptoms. By comparison, panic disorder features unbidden panic attacks. Symptoms of ME/CFS not found in GAD and panic disorders include post-exertional malaise as well as autonomic, endocrine or immune symptoms (see Diagnostic Worksheet). In addition, patients with primary anxiety disorders generally feel better after exercise whereas exercise worsens symptoms in ME/CFS. Finally panic disorder is situ-ational and each episode is short-lived, whereas ME/CFS persists for years." (section 4.5)
I find it slightly odd that sedation is singled out as the side effect of alcohol - I've heard various other effects such as people feeling very ill the next day (even from quite small amounts like one or two units of alcohol)"In addition, because alcohol intolerance (causing sedation) may be reported, alcohol use should be minimized or avoided. " (Section 5.9)
10 = No symptoms; excellent concentration; over achiever (sometimes may require less sleep than average person).
1:15m – 2:15 pm
Session: IACFS/ME Clinical Practice Manual: The 2014 Revised Primer Guidelines Panel Chair: Fred Friedberg, Ph.D.
Panel: Lucinda Bateman, M.D., Kenneth Friedman, Ph.D., Leonard Jason, Ph.D., Charles Lapp, M.D., Lucinda Bateman, M.D., Staci Stevens, M.A., Rosamund Vallings, M.B., B.S.
-------29. Activity
Resting all the time is just as bad as pushing and crashing. No one ever gets better from lying around all the time. Once again, despite what you may hear from other sources even the sickest patient can do some activity, and it is important to attempt some activity if you expect to improve. Studies have shown that even CFS patients in wheelchairs can exercise as long as they do not over-exert. That leads to the question, how much exertion is too much. Exercise studies in our laboratory and elsewhere have demonstrated at least three ways to set objective limits on your exertion: interval activity, limiting your heart rate, and limiting the number of steps taken per day.
34. Severely Ill Patients
[..]
"Encouragement. Try to achieve something every day; and do not accept your current restrictions. (Aim to improve 1% each week!)"
CFS/ME: Treating the Severely Ill
Charles Lapp, M.D.
Medical Director, Hunter-Hopkins Center
3:30 pm – 5:30 pm
Session: Diagnosing CFS/ME; Difficult Clinical Cases Session Chair: Nancy Klimas, M.D.
Immediate Past President, IACFS/ME
Charles Lapp, M.D.
Lucinda Bateman, M.D.
Rosamund Vallings, MNZM, MB BS
Daniel Peterson, M.D.
http://www.cdc.gov/cfs/news/features/cme.html
Medscape course on CFS - Chronic Fatigue Syndrome: The Challenges in Primary Care
By contrast, the ME Primer advises, “Optimize functionality: Depending on severity, some but not all patients in the chronic phase are able to incorporate some brief activities into their day to assist in maintaining and improving function.”I wouldn't be surprised if Dr. Lapp (one of the co-authors) was at least partly responsible for the problematic parts in the Primer (my recollection is these were nearly all on the severely affected).
I did, when OI kept me from sitting up for a few weeks Theoretically I should have become deconditioned and weaker, yet once the OI subsided I was stronger than I was before my little lie down. Of course, that wore off after a few days of "normal" activities.No one ever gets better from lying around all the time.
Of course CFS patients in wheelchairs can exercise! (see below)
The trick is waiting until a GET sympathizer appears, brimming with condescending optimism ...
Start with the one-finger salute, then gradually work up to a V sign.
http://en.wikipedia.org/wiki/The_finger
On a more serious note, if you are so disabled you need a wheelchair, exercising for the sake of exercise is the least of your concerns. And if you must fall for the (usually false) hope/hype of graded activity, at least work on practical daily functions first, not on ideological-based physical exercises which waste precious resources.
So that's what they mean when they talk about starting GET by drawing letters in the air for the severely affected! It makes so much sense now - I'd feel better when flipping off the "therapist" tooStart with the one-finger salute, then gradually work up to a V sign.
Wheelchair cfsers could do synchronized swimming as physiotherapy and graduate to underwater line dancing????