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ME/CFS Primer for Clinical Practitioners

Dolphin

Senior Member
Messages
17,567
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
Perhaps not exactly the same thing, but I recall the American Journal of Medicine had two opinion pieces giving alternative views:


The biology of chronic fatigue syndrome.
Komaroff AL.
Am J Med. 2000 Feb;108(2):169-71. No abstract available.


(I can't find that online but think it may be similar to this:
"The Physical Basis of CFS"
http://www.cfids.org/archives/2000rr/2000-rr2-article01.asp )

Chronic fatigue syndrome: the fundamentals still apply.
Manu P.
Am J Med. 2000 Feb;108(2):172-3. Review. No abstract available.
PMID: 11126312

The problem with this was it gave Peter Manu a platform to spout psychobabble. I think a lot of people can be influenced by psychobabble/psychological hypotheses once they hear them so I think it can be a problem giving people a platform.
 

Dolphin

Senior Member
Messages
17,567
I can't remember if it was highlighted but the IACFS/ME website says:
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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.
------
The IACFS/ME newsletter said:
--

"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."
--
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.

 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I can't remember if it was highlighted but the IACFS/ME website says:
------

------
The IACFS/ME newsletter said:
--

--
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.
that's a good suggestion
 

Dolphin

Senior Member
Messages
17,567
Here's a draft of what I'm thinking of sending in. I think I'll sit on it for a day or two in case anything occurs to me. It's also a bit of a ramble so perhaps I might be more willing to put effort into the wording.

(part 1 of 2)
<various praise>

The severely affected are a very vulnerable group: they likely depend on others accepting how ill they are if they are not to deteriorate.

The others they depend on can vary: quite likely if they don't have the support of a medical doctor, it will cause them a lot of problems, in terms of getting financial supports (which they very likely will need as it's unlikely to be able to work) and also possibly other sorts of support, from other medical and care professionals. Also if a medical doctor is not convinced of their disability, the doctor could influence people around them (partner, parents, etc.) (Although some people won't even have family to support them).

It doesn't "suit" people for somebody to be severely affected. People around them would much prefer if they were less dependent on them and more able to help themselves and contribute to the household. And medical and health professionals would prefer not to have to do home visits, write reports in support of the patient, etc. Also it goes against almost everything one is told i.e. being sedentary is bad for people's health. It can freak people out as being horrific and people can go into denial that somebody can be so unwell with an "unexplained" illness which doesn't have abnormal test results.

For somebody who is severely affected it is hard to get to the stage that people around them can accept they are as ill as they say they are. So anything that suggests they can get themselves out of the situation can be a problem as it can put the seed of doubt in people's mind that they are or need to be as ill as they say they are.

The other thing about advice to severely affected (housebound or bedbound) patients is that there is virtually no published evidence regarding them (people who couldn't attend outpatient appointments). The FINE Trial was supposed to look at this group but broadened its intake. I recall one case study have a couple of inpatients but that is not a large number of people to depend on to make decisions on; also there could be selective reporting with plenty of other people having the therapy but their results not being reported on.

So in this context I want to bring up what is written:

"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)
- this suggests there will be progress. At the very least, the wording needs to be clarified that progress is by no means guaranteed.

Similarly, the bolded bits in the extract give the impression that improvement is likely to happen, even though there is little or no evidence for such claim:
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)

If one wants to make different levels of suggestions, one way would be to have the activities one recommends for functional capacity rating 1-3 and then in a separate paragraph have the activities one recommends for functional capacity rating 4-5, without any suggestion that the first group will naturally go up to the higher functioning group.

Personally, I don't think there should be talk of strengthening exercises, particularly in ratings 1-3. Daily living will most likely involve as much activities as they need.

I think it's quite likely that strengthening exercises, and also elastic bands or light weights could lead to repetitive strain injuries and/or extra pain in people severely affected.

Also, strengthening exercises are quite speculative for any group - they have barely been tested.

In the one trial I recall, this form of intervention didn't come out that well:

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>

Talk of strengthening exercise gives impression that the weakness is due to disuse and muscle wastage. But this is very often not the case. For example, people can suddenly have a setback and feel weaker without there having been time for disuse and muscle wastage.

Muscle weakness seems to many people to be a core part of the illness, rather than a secondary effect.
For example, "A new onset of significantly abnormal levels of muscle fatiguability and/or muscle weakness, precipitated by relatively minor levels of activity. Symptoms typically worsen during the next 24-48 hours."
is one part of the ME criteria in:
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.

People with severe ME/CFS could thus have the muscle weakness from simply having overdone it as it is so easy to do that at that level - they may in fact be continuously doing it until they improve.

There is research evidence for this phenomenon (muscle weakness) in this paper:

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.

The start of chapter 5 says:

"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."

This could even make it appear that talk of energy envelope isn't relevant for the severely affected.

The primer doesn't talk about some speculative therapies so I don't think it needs to talk about exercise for the severely affected.If there is going to be talk of (speculative) exercise (regimes) for the severely affected, I think it would be better that it was either in Chapter 5 or Section 6.1 but not both.

In general, I question the need to talk about exercise specifically for the severely affected. Simply doing activities of daily living tends to be all the activity they need to get to their limits. Doing exercise means they have less energy for either other basic activities such as personal hygiene or pleasurable activities and time with their family/friends. Having time to devote to family is not just good for the patient themselves but will be appreciated by those around them, especially if they have children but also a partner, etc.
 

Dolphin

Senior Member
Messages
17,567
(part 2 of my draft comments - I thought I'd split it up to shorten each post)

"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)
References 68 and 69 are both Fibromyalgia references, so it's slightly misleading.

Plenty of people with ME/CFS have had problems with physical therapy, massage, hydrotherapy, yoga and Tai Chi (the latter probably mainly due to being upright) (see for example ME Association 2010 survey results http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res4.pdf ) so it might be good if this was re-worded a little.
e.g.
"Non-pharmacologic interventions that have been helpful for pain in Fibromyalgia include 68,69 pacing of activity, physical therapy, stretches, massage, acupuncture, hydrotherapy, chiropractic, yoga, Tai Chi and meditation (re-laxation response) and so might be useful to try in some patients"

---------
"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)
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.
---------

Random comments (probably less important):
(i) I find the use of the word "unbidden" here unclear. A dictionary tells me one meaning of "unbidden" is "not invited or asked" but that could be said about any symptom, so I'm guessing that's not the meaning and instead it is referring to symptoms coming out of the blue. Perhaps either it could be replaced or words put near it to clarify exactly the point being made:

"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)


(ii)
"In addition, because alcohol intolerance (causing sedation) may be reported, alcohol use should be minimized or avoided. " (Section 5.9)
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)

(iii) You may not be able to change this one but I find odd the use of "over achiever" in Appendic C (Functional Capacity Scale)
10 = No symptoms; excellent concentration; over achiever (sometimes may require less sleep than average person).

"high achiever" might do the job. Possibly not a major point as point 10 means somebody is well - I'm just slightly concerned it might feed into the suggestion that people bring the illness on themselves, or bring relapses on themselves, by "over achieving".
 

Dolphin

Senior Member
Messages
17,567
Just listening to a bit of the CFSAC meeting. Dr. Gurwitt is speaking. He mentioned he was involved in writing it and also now he is a member of the revisions subcommittee. I think it's a good sign that they have such a subcommittee.
 

Dolphin

Senior Member
Messages
17,567
The IACFS/ME Primer is being translated into French, Spanish & Japanese versions and should be available soon (Fred Friedberg, in his testimony to the Fall CFSAC meeting).
 

Dolphin

Senior Member
Messages
17,567
Dr. Gurwitt at Fall CFSAC meeting:
Section on severely affected - has been re-written and expanded upon
Rosemary Underhill has written it.

Eileen Holderman asked when a revision might be available.

Dr. Gurwitt wasn't sure - guessed it would be available in 2-3 months

He said the section on the severely affected will be the first thing to be re-submitted for the panel to look at.
 

Dolphin

Senior Member
Messages
17,567
IACFS/ME conference program in March:

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.
 

Dolphin

Senior Member
Messages
17,567
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).

Here's a presentation he gave in Japan in 2012 (I recall him saying similar things before):
http://mecfsj.files.wordpress.com/2...5a8e69687hpe794a8efbc88e88bb1e8aa9eefbc89.pdf

He seems to have a different philosophy for the severely affected: put simply, he doesn't seem to believe there's a ceiling of activity for such patients. If there is a ceiling of activity for moderate or mild patients, why can't there be a ceiling of activity for the severely affected?

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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.
-------

What studies have shown that even CFS patients in wheelchairs can exercise as long as they do not over-exert? I wonder has he some interpreted the CBT/GET school papers as being on the severely affected. They haven't been.

If there is a drug, people might improve - so I don't accept that " No one ever gets better from lying around all the time"

34. Severely Ill Patients

[..]

"Encouragement. Try to achieve something every day; and do not accept your current restrictions. (Aim to improve 1% each week!)"

Why are severely ill patients being lectured like this? Who would want to accept their current restrictions if they are severely affected?

Everyone can aim to be better but why are the severely affected in particular being lectured on this? As I said, he seems to have a different attitude to the severely affected: he is less accepting of their disability.

---
Dr. Lapp is giving this presentation on the patient day which again shows his possible influence re: matters relating to the severely affected:
CFS/ME: Treating the Severely Ill
Charles Lapp, M.D.
Medical Director, Hunter-Hopkins Center

Given this, it also seems likely in the main conference he will be talking about the severely affected in this portion:

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.

Dr Lapp is also involved in the CDC's education program:

http://www.cdc.gov/cfs/news/features/cme.html
Medscape course on CFS - Chronic Fatigue Syndrome: The Challenges in Primary Care
 

Seven7

Seven
Messages
3,444
Location
USA
I have been in both ends, In bed and very active. YES THE CEILING CHANGES!!!! And guess what, once you are very active anything can bring the ceiling down again and you have to start from scratch to work your way up again.

Dude when you have to rest from brushing your teeth, and just the essential in life, when are you going to exercise and recover???? Just taking a shower (ON A GOOD DAY OF A VERY SEVERELY AFFECTED) requiems hours of recovery. So if you take care of the basics, recover, eat, recover.... How many hours does a day have just so you can recover and do what you need to do to survive!!

CLUELESS PLP!
 

Ember

Senior Member
Messages
2,115
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).
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.”
 

biophile

Places I'd rather be.
Messages
8,977
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/priorities. 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.
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.

You can then get more aerobic activity by raising and lowering that hand sign a few times.
 
Messages
15,786
Start with the one-finger salute, then gradually work up to a V sign. :)
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" too :thumbsup:
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Wheelchair cfsers could do synchronized swimming as physiotherapy and graduate to underwater line dancing????

Treat the illness correctly as in the immune/infection issues and the physical function improves. This has happened too many even without a 100% cure.
 

shah78

Senior Member
Messages
168
Location
st pete , florida
How can anyone read this crap! I went straight to the "DIET" SECTION: "avoid RICH, FATTY FOODS" TRY (I assume conventional)DIARY" and some" SHOULD AVOID GLUTEN". People, this is awful advice, and nobody in 59 responses has mentioned it! What are you people eating? You can not expect to cure any manifestation of CFS/FMS/ME while eating the Standard American Diet. CFS is a desease of civilization plain simple. We eat species inapproriate food, live in climate controlled houses,live withinn a EMF/chemical cesspool . What am I missing? Sure I got the "triggering infection" like most all of you. But that was thirty years ago. I had to change almost every aspect of my lifestyle to "cure" CFS/FM The doctors did ZERO!!! Why do you keep looking for them to help you? ........Second, on the same page 25. Try B12 injection with hydroxycobolomin. THIS IS PATHETIC! These people are MORONS.