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

jspotila

Senior Member
Messages
1,099
Kim is in her 20th year now. If I understand it correctly she sits on all the permanent committees and the nominating committee is a permanent committee.

Ms. McCleary is a non-voting member of the nominating committee.

I think there are now three psychologists on the board and all this effort is being put into CBT GET, etc.

Do you know them? Please be honest about when you are speculating. Two of these three psychologists have CFS, and the third is the mother of a patient. NOT A SINGLE ONE believes in the psych school of CFS, or that CBT/GET are treatments for CFS. This kind of conjecture is how rumors get started.
 

oerganix

Senior Member
Messages
611
Mithriel said:"Firstly and most importantly, I don't think activity programmes or exercise regimes have any place in management except as a footnote. It is not a case of which sort we should have but why have one at all."

I have said it before, but Mithriel says it in different words, so I want to emphasize this point again.

A newsletter for polio sufferers or MS sufferers is not going to devote much, if any, space to such as GET/CBT. That any newsletter for CFIDS/ME does, I feel it is just a waste of energy, time and space.

I would really prefer an article debunking those psychobabble "studies" that claim GET/CBT are effective therapies and the only effective therapies. It looks to me like there has been a seachange (incomplete, yes) in public attitudes and understanding that this illness is biological and now would be the time to solidify that understanding.

I'd like to see the headline: CFIDS: We Know What It's Not.
Then an article saying:
We know it's not mental illness/depression or any form of "wrong thinking".
It's still a mystery as to what it IS, but we've got more clues than ever, and more interest in putting the clues together to find the answer.
 

Cort

Phoenix Rising Founder
Yes, it is an interesting point that we are constantly told we are not doing things right.

But just to clarify what Fred Friedberg is saying. He is recommending graded activity for *all* the patients (1/4) who are least active. The fact is that many of these too might be doing too much. My glands swell up later if I walk relatively short distances. My ceiling is a lot lower than other people's (it wasn't always this way - I was mildly affected for the first few years). What the severely affected need more than most is support - but what Fred Friedberg is saying is jeopardising people getting this.

The envelope theory is different as this adjusts to what the individual person feels and how their body reacts so can apply equally to people of different severities. Pacing is similar.

This "He is recommending graded activity for *all* the patients (1/4) who are least active. " That is not my understanding at all. I can't imagine that he would apply his pacing strategies in such a blunt fashion. That 1/4 of the patients doing too little could be anywhere on the functional scale. He recommends pacing everything: thinking, talking, eating, walking - basically slowing things down.

He actually finds that as people increase their wellness levels they often decrease their activity levels and he's measured this using peodometers. He r
 

Cort

Phoenix Rising Founder
Somewhere in the last few pages someone said they think the CAA will eventually take down their SPARK! materials. Well, I've been asking them to do so for many months now and what they did is they took the link to the SPARK! materials off of their site but left all of them up on the web so anyone and everyone still has full access to them.

You are really tough Teejkay! My understanding is that they have contractural agreements that require them to leave the page up. At some point in the not too distant future they'll be able to legally take it down completely. What you are seeing is movement in the direction you want.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I'm not sure if most doctors truly understand the illness even if they are sympathetic. The people who understand the management aspects of the illness best I find are people who have the illness (which can include some doctors and other professionals) and then people who live with. Nearly everyone else seems to say problematic things at least the odd time.

I don't think everyone should be encouraged to do exercise programs. Professionals could say that if patients want to do an exercise program, this is how they could do it but that's different from recommending them for everyone.

3 Dutch studies and Fred Friedberg have now found that when people have been encouraged to go for walks, they don’t do extra steps across the day.
This means that if they are going for walks, they are cutting out other activities.

A lot of people really aren’t in a position to be cutting out activities. They might have pressure to do some sort of paid work.
Or they might have children to mind – going for a walk may mean they have less time to mind their children.
Or going for a walk might mean they have less time to put into their relationship with their partner. Or energy they might spend socialising (which might lead to finding a partner).
Or they might have other responsibilities like relatives or minding their house, cooking, shopping, etc.

So I don’t think there should be too much pressure on people to do “meaningless” walks or other activity. They should try to do a reasonable amount of activity (and could keep track of this using a pedometer) but that shouldn’t mean they should be expected to use up a good percentage of their energy going for walks or other exercise.

If they want to want to exercise, as I say, they could exercise but I don’t think it should be part of a management program that everyone should be expected to do.

Tom, this is brilliant! Thank you so much for articulating what I've been wanting to articulate.

I really think a big part of our problem is that of how others are perceiving us and how they are misunderstanding what we're truly dealing with as illustrated so well in Roy Snow's story.

We need a patient organization that's working hard to educate the medical professionals and the public about what it really means to have a disabling, invisible, chronic illness that waxes and wanes at its best and completely decimates at its worst.

However, I'm wary of the CAA trying to educate others about CFS because I think most or many of them don't fully understand CFS themselves. I didn't fully understand it the first 14 years I had it because I was lucky enough to have had it become mild after the first year. Now I've been mostly bedridden for 10 more years after that and now I understand CFS on a whole new level but I still look well to others and there are only 2 people in my life who really get it and I know I'm lucky to have them.
 

Orla

Senior Member
Messages
708
Location
Ireland
Hi Maarten, very good points there. Yes a good GP is vital, and more important than any adjunct help a counsellor can give. But sometimes people do need to talk things through with someone outside of their own immediate circle.

For example someone might need to talk to someone privately about how they feel about the changing dynamics in their relationships, or everyone around them might be driving them crazy (I am not talking about my own situation there), and they cannot discuss things, or do it counstructively, directly with the people in their life (even if it is their intention to talk to these people at some point). Another problem for many people with ME/CFS is that ones social circle tends to shrink so much that a person could easily be left with no one to talk to, or talk to regularly, about life and so on. That would be where a counsellor might come in useful.

Of course some of this support can also be provided by support groups and internet forums like this. This in itself would be wort referring to in literature if there was a section on psychological support. Many people find it a relief to talk to someone else with ME/CFS, and they often find that others have the same problems as them. Many people might find this more important and helpful than seeing a counsellor.

And you make a good point about some psychologists needing help themselves (and lets face it if they are really screwed up they could cause a lot of damage) and there is the issue of insurance companies and billing etc, which to be honest I had not thought about. I maybe should have mentioned (though I don't want to be going on about my own experience, as it is only one experience, and frankly I feel a bit weird discussing it on the internet), the place I went to was a charity based place which had a sliding scale of payments depending on income (i.e. it was not a money making racket, and I was costing them money by going), I self-referred (so if it had not worked out, no weird feedback/notes going back to the GP), a friend of mine recommended the person I went to (so I knew he wasn't nuts), and it was non-directive counselling where I controlled the pace of the sessions, what we discussed, and so on.

It is a good idea to find out what type of approach a counsellor is going to take before going, as I think this person-centred non-directive approach might be better for many, and might make the counsellor less likely to be making stupid suggestions (though this depends on how much sense they have, whether or not they are a bit screwed up themselves, and how good their training has been).

Orla
 

Cort

Phoenix Rising Founder
As Orla said, a patient may exist somewhere who does too little but I have never met one either. We are all forced to live such limited lives we are champing at the bit to do something. How many of us do things which we know will make us feel bad simply because we are bored to distraction. It is people with depression who need chivvied to do things.

Mithriel

Personally I think the fact that most people are overdoing it - not underdoing it - is a fact that has not been brought out sufficiently. I imagine that idea hits alot of UK practitioners right in the gut; their mindset has been, after all, has traditionally been that we are holding our ownselves back.

What Bruce Campbell's Self Help course indicates that ME/CFS patients generally have to decrease their activity levels in order to increase them (hopefully) at some point. Obviously many people just find an activity level they feel better at but some do, as Bruce;s case demonstrates, very slowly return to health. My guess is that the CNS slowly relearns how to handle physical, mental, emotional, sensory, etc. activity without throwing itself into a tizzy. Why physical activity is so much more difficult to handle is an interesting question -and one that I hope we can all answer some day.

I do think that in any large group of people, of course, you'll find people who overdo and underdo the activity spectrum.

I wonder if at the least research community is 'getting' CFS more; Bliejenberg wants to make PEM a central part of a CFS definition. It would be interesting to see what his version of CBT is. For sure, it includes watching out for negative thoughts that rile up the body but what activity and pacing? Based on what he said there's little room for pushing through a crash. If I remember correctly he laid out a scenario of cytokine caused (immune caused!) problems and oxidative stress......not what you'd think from this oft published psychologist.

With regard to psychologists - Dr Leonard Jason is a psychologist! So Dr. Freidman - who wrote a critique of CBT. There are some enlightened psychologists out there. I imagine a good portion of them have CFS. Dr. Freidman certainly does.
 

oerganix

Senior Member
Messages
611
Cort said: "There are some enlightened psychologists out there. I imagine a good portion of them have CFS. "

Yes, you are right. How unfortunate that the only docs who understand also have the illness. But fortunate for us that some do. I also read that about half the psychs involved in writing/updating the new DSM oppose having CFS/ME moved to a category that includes hypochondria and other "somatizing" illnesses. I hope the psychs at CAA have made just such a statement to them, as April 20 is the deadline for comments.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
There are MANY psychologists and mental health professionals who are caring and compassionate people.

I have contacted all the health professionals I know, including four local therapists, about the DSM-5 reclassification issue. Amazingly NONE of them knew anything about it. And all of them were eager to write in their comments against it.

I encourage everyone else to do the same.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I finally decided to just take the test at the CAA for their newest CME and that's allowing me to view the other pages after subscribing to the link:

http://cme.medscape.com/viewarticle/581527_5

The answers aren't always apparent yet but some of them are with a graph showing how everyone who's taken it has responded and it's very revealing.

The first few pages looked very good, much of it is saying exactly what we are here but then I came to this part on p. 5:

5. Consider cognitive behavioral therapy (CBT). The goal of CBT in the management of CFS is to help patients cope with their illness, change behaviors that can contribute to symptom expression, and develop an individualized activity plan to avoid postexertional malaise on one extreme and deconditioning on the other. While CBT is frequently prescribed as a coping strategy, it can also improve function and activity levels.

Some patients are resistant to this therapy because they mistakenly believe health practitioners who prescribe CBT think CFS is purely a psychological illness. Educating patients about the role CBT can play in helping them learn to manage activity levels, stress, and symptoms may help overcome this reluctance.

Because cognitive behavioral therapists who are knowledgeable about CFS are not available in many communities, clinicians may find it useful to practice an informal kind of CBT in their own practices when referral to a therapist isn't possible. Educating patients about pacing their activities, avoiding or reducing known stressors whenever possible, building their coping skills, and accepting the limitations of their illness can be achieved by a clinician in a primary care setting. (See the section on CBT in Managing Activity for more information.)


Bummer!! :Retro mad: It does look like they are trying to explain a CBT that can truly be helpful to CFS patients but the term "CBT" is still being used against us and instead of explaining that, the CAA says: "Some patients are resistant to this therapy because they mistakenly believe health practitioners who prescribe CBT think CFS is purely a psychological illness."

So we look like we're just mistaken.
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
Re: Overdoing it

Personally I think the fact that most people are overdoing it - not underdoing it - is a fact that has not been brought out sufficiently. I imagine that idea hits alot of UK practitioners right in the gut; their mindset has been, after all, has traditionally been that we are holding our ownselves back.

I couldn't agree more, Cort.

I would bet my non-existent disability check that most people overdo it. If I had been smarter about living within reasonable boundaries for the last 10 years I probably wouldn't have fallen off the work wagon a year ago. My push-crash cycles were overlapping. It took a forced stop of pushing through every hour/day/week to realize where my limit really is. Needless to say it fell drastically because I just kept going like the the Energizer bunny, when I really didn't have the juice of a 90% used battery in the end. Most of us do if for no other reason than trying to earn a living.

I don't suppose we have any documented evidence of this sort of trend, however.

Otis
 

Dr. Yes

Shame on You
Messages
868
With regard to psychologists - Dr Leonard Jason is a psychologist! So Dr. Freidman - who wrote a critique of CBT. There are some enlightened psychologists out there. I imagine a good portion of them have CFS. Dr. Freidman certainly does.

Just to prevent confusion... I think you mean Friedberg, not Friedman, right Cort?
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Ms. McCleary is a non-voting member of the nominating committee.



Do you know them? Please be honest about when you are speculating. Two of these three psychologists have CFS, and the third is the mother of a patient. NOT A SINGLE ONE believes in the psych school of CFS, or that CBT/GET are treatments for CFS. This kind of conjecture is how rumors get started.

Jennie,

You are taking that out of context. I mean the last several pages of people posting here and all the countless posts elsewhere about what the CAA has put out about CBT, GET, pacing, etc. etc. etc.

Implying that I am being dishonest is insulting.

You wrote on another thread that you had been thinking about your post for 20 minutes. I often take over an hour to write a post. It's difficult to write something that can't be picked apart by a skilled litigation attorney.
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
'mistaken belief/CBT'

Bummer!! :Retro mad: It does look like they are trying to explain a CBT that can truly be helpful to CFS patients but the term "CBT" is still being used against us and instead of explaining that, the CAA says: "Some patients are resistant to this therapy because they mistakenly believe health practitioners who prescribe CBT think CFS is purely a psychological illness."

So we look like we're just mistaken.

This 'mistaken belief' crap has to go. Many patients have legitimate reservations about the blanket application of one coping strategy at the apparent exclusion of all others is my reply.

For me I would have given CBT a try when offered but when I had the $ I didn't have the time and now I have the time but not the $. Frankly I get more resistant when things are framed this way.

I have a very cool psychiatrist who believes in a physiological basis for CFS keeps up with research. I dropped the Light article on him the last time I saw him - he knows what cytokines are!

Otis
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
You are really tough Teejkay! My understanding is that they have contractural agreements that require them to leave the page up. At some point in the not too distant future they'll be able to legally take it down completely. What you are seeing is movement in the direction you want.

Why am I tough?

Maybe you've told me this before and I didn't get it due to brainfog.

Who is it that the CAA has these contracts with? The CDC?

Am I tough because I care about the fact that the CAA, our major patient support organization has been teaching medical professionals and the public misinformation about CFS?
 

jspotila

Senior Member
Messages
1,099
Jennie,

You are taking that out of context. I mean the last several pages of people posting here and all the countless posts elsewhere about what the CAA has put out about CBT, GET, pacing, etc. etc. etc.

Implying that I am being dishonest is insulting.

You wrote on another thread that you had been thinking about your post for 20 minutes. I often take over an hour to write a post. It's difficult to write something that can't be picked apart by a skilled litigation attorney.

Roy,

I apologize if my post offended you. I did not intend to imply that you were being dishonest. Your post said,"I think there are now three psychologists on the board and all this effort is being put into CBT GET, etc." I interpreted this sentence to mean that you thought the presence of three psychologists on the Board was leading to what you see as an effort being put into CBT. Such a conclusion would be wrong for several reasons, one of which being that I do not think (though I do not know for sure) that you know the three people in question. Again, I apologize if I misinterpreted what you were saying.

I may have litigation skills but I do not try to pick apart anyone's posts. I don't have the energy, and it would not be productive in any case.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I was initially pleased with the improvements in the Exercise section in the new CME that's put out by the CAA which I've posted below. I was not happy the CME when I continued reading the rest of the materials:

http://cme.medscape.com/viewarticle/581527_8

P. 8

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]
Avoiding Extremes

The objective of exercise and activity management is to find a balance that allows patients to avoid postexertional malaise and prevent deconditioning so they can achieve better function and improved quality of life.

Some people with CFS inappropriately avoid all activity because personal experience has demonstrated a link between exertion and symptom severity.[69,70] An even greater number of people engage in an endless "push-crash" cycle in which they do too much, crash, rest, start to feel a little better, and do too much once again, perpetuating the cycle.

It is critical that emphasis be placed on avoiding these 2 extremes and balancing activity. Appropriate rest is a vital element of CFS management, and patients must learn to stop activity before illness and fatigue are worsened. In the early stages of resumed activity, patients should avoid becoming tired with physical activity.

There is considerable heterogeneity in CFS patients, with some able to tolerate much more activity than others. It is important for patients to learn to recognize their own individual threshold of activity and to work with clinicians to develop a personalized activity program.

This is more like it but I do have a problem with this statement:

Some people with CFS inappropriately avoid all activity because personal experience has demonstrated a link between exertion and symptom severity.

"inappropriately" should be "appropriately" which Advocate pointed out to me. It is appropriate for us to avoid activity when we are in the severe stages of CFS. I learned this over the years myself.

How dare they say it's not appropriate!

However the CAA is still not addressing those of us who are in the 25% group and cannot exert at all without experiencing a huge worsening of symptoms.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
There are MANY psychologists and mental health professionals who are caring and compassionate people.

I have contacted all the health professionals I know, including four local therapists, about the DSM-5 reclassification issue. Amazingly NONE of them knew anything about it. And all of them were eager to write in their comments against it.

I encourage everyone else to do the same.

Thank you very much Dreambirdie! That's awesome. :victory:
 

Orla

Senior Member
Messages
708
Location
Ireland
Hi Cort, you wrote (in answer to Tom K, for others Tom K's comment is in inverted commas)

This "He is recommending graded activity for *all* the patients (1/4) who are least active. " That is not my understanding at all. I can't imagine that he would apply his pacing strategies in such a blunt fashion. That 1/4 of the patients doing too little could be anywhere on the functional scale. He recommends pacing everything: thinking, talking, eating, walking - basically slowing things down.

He actually finds that as people increase their wellness levels they often decrease their activity levels and he's measured this using peodometers.

Tom is correct in what he is saying about Friedburg. He has posted on it here

http://www.forums.aboutmecfs.org/sh...nd-intervention.&p=58635&viewfull=1#post58635

Friedberg, I think, used to be better than he is now, but seems to have gone done the sort of CBT thinking route (re maladaptive behaviours, and trying to push some to do more, basically without good evidence that they are doing too little). Though I think I remember him mentioning this idea before of patients doing too little (just not so aggressively). I think this problem is so rare as to be almost non-existent (I have had a lot of contact with patients in the last 9 years or so), and certainly the idea is given undue prominence. If it is ever mentioned this point (or how rare it is) would need to be stressed.

Teej you are right to be concerned about that sentence re CBT. Doctors who suggest CBT for ME/CFS either don't know what CBT is, they are calling something CBT which is really something else, or they think the patient has a mental health and behavioural problem (that is what CBT is for. CBT is not counselling as I have mentioned before)

I posted this before about CBT (from a blog by a CBT therapist. This comment is not about ME/CFS)

"...CBT is designed to treat mental illness. There is no such thing as CBC (‘cognitive behavioural counselling’) for helping mentally well people with the problems of everyday life. The fundamental difficulty with compulsory CBT for trainees that there’s no illness to treat, so it would simply be going through the motions in a limited and pointless way.

Disappointingly, the view was expressed in this discussion that CBT is just a bunch of techniques for living life, and that anyone at all, mentally ill or mentally well, can learn techniques. I think it’s extraordinary that someone with so little understanding of how CBT works should be found piping up in what was meant to be a serious discussion. It’s as I wrote above — even in an orientation as simple as CBT there are therapists who do not understand the methodology."

http://cbtish.wordpress.com/2009/10/15/twist/#more-1761

And here an interesting post about what mental health practitioners can think if you get a CBT referral:

Effect of physician-recommended treatment on mental health practitioners' attributions for chronic fatigue syndrome.

Results of this investigation support the hypothesis that physician recommendations for CFS treatment can influence subsequent attributions about a patient's illness among mental health practitioners.
http://www.forums.aboutmecfs.org/sho...ers-attributns
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
After talking about nutrition the CAA's CME goes on with more about Pacing etc... on P. 8:

http://cme.medscape.com/viewarticle/581527_8

Pacing and Energy Management

Pacing, an energy management technique, can be especially beneficial for CFS patients[74,69] and should be considered for most CFS patients. Pacing involves moderating activity to minimize the push-crash cycle and reduce the stress and frustration that occur with relapse.[75]

* Encourage patients to be aware of their own personal threshold of relapse, even when it seems like a moving target, and learn to avoid triggering relapse symptoms by keeping activity within a safe limit. Patients who learn to adapt to a changing threshold of activity and pace activity accordingly will be more successful at managing the illness and increasing function.

* Advise patients to consider all the movement and activity they engage in, including personal grooming, grocery shopping, household chores, tasks performed during full- or part-time employment, anaerobic exercise, and aerobic exercise, when developing an energy management program.

* Instruct patients to pace activity, performing specific activities, such as household tasks, in small, manageable chunks with rest breaks, rather than in a single energy-depleting effort. Activity should be spread evenly throughout the day, and it should not exacerbate fatigue or other symptoms. Once patients are stabilized, activity is incrementally increased.[76]

* Instruct patients to view their available energy as if it were a bank account. If they overexert themselves, it is like being overdrawn at the bank, and they have to pay it back by resting more the next day. As time passes, patients learn how much energy they can expend without experiencing the characteristic postexertional malaise.[77]

Strength and Conditioning

A strengthening and conditioning program can reduce pain, prevent muscle spasms, increase strength and flexibility, improve balance, reduce falls, and enhance stamina and function in CFS patients.[78] Low-level exercise, including stretching, strength training, and simple resistance training, appears to be reasonably well tolerated by most patients, as long as they learn to avoid overexertion.

* Encourage patients to start with simple stretching and strengthening exercise, using only body weight for resistance. Gradually add wall push-ups, modified chair dips, and toe raises to the routine. Increase repetitions gradually. Patients can begin with a set of 2-4 repetitions and build to a maximum of 8.

* Add resistance exercise as strength improves. Exercise bands or light weights are both good options for simple resistance training that increases muscle mass and metabolic rate without overtaxing CFS patients.

* Add a focus on strengthening core abdominal muscles to relieve back pain and improve overall circulation.

* Advise patients who do not tolerate an upright position to use other positions rather than standing. Stretching and strengthening exercises can be performed on a floor mat or in water.

* Be aware that for patients who are severely deconditioned, it may be advisable to begin with a physical conditioning program, which is primarily anaerobic exercise, before introducing aerobic activities.

* Encourage patients who can tolerate greater levels of exercise to engage in movement therapies like yoga, tai chi, and qigong and light aerobic activity like short walks and swimming.

* Educate patients about the role that even modest strength-building exercise can play in increasing muscle mass and setting metabolic rate. Since many CFS patients have a very low metabolic rate, and metabolic syndrome is a common comorbid condition, building muscle mass is important.

Graded Activity and Exercise

Graded activity refers to movement and exercise that is started slowly and increased slowly, gradually increasing both the level of activity and the duration. Graded exercise may include both anaerobic and aerobic activities and can be effective in improving function and decreasing fatigue.[79,74] Functional capacity varies greatly from patient to patient, so exercise plans must be tailored accordingly.[80,81]

* Teach CFS patients that all exercise needs to be followed by a rest period at a 1:3 ratio, resting 3 minutes for each minute of exercise. Some patients can exercise for only short periods, just 2 to 5 minutes, without risking a relapse. This kind of interval activity -- exertion followed by rest -- can enable patients to gradually increase activity levels over a period of weeks or months.

* Advise deconditioned patients to limit themselves to the basic activities of daily living until they have stabilized. Several daily sessions of brief, low-impact activity can then be added, such as a few minutes of stretching, strength exercises, or light activity like walking or cycling. These sessions are increased by 1 to 5 minutes a week as tolerance develops.

* Instruct patients to return to the most recent manageable level of activity if they report that exercise is worsening symptoms.[76] Daily exercise may be divided into 2 or more sessions to avoid symptom flare-ups; some patients, however, cannot exercise daily early in the course of their rehabilitation.

* Advise patients to adapt their exercise program to allow maximum mat time. Alternating a short session of standing exercise with a short session of mat work may enable patients to tolerate more exercise without precipitating a crash.

* Encourage patients to consider aerobic activities they can do close to home, like walking for short intervals or swimming in a backyard pool. Going to the gym can involve showering, dressing, driving, and other exertion, exhausting a patient's energy envelope before aerobic activity even begins. And it may make some patients inadvertently overexert to "keep up with" other gym patrons.

* Write physical therapy referrals that are quite specific in outlining appropriate physical conditioning and graded exercise programs for CFS patients.


I'd like to hear what you all think of this.