Today, Thurs Oct 8: CDC PCOCA conference phone call on pacing with Dr Charles Lapp & Bruce Campbell

[Sasha]

I'm sure there must be a thread on this already but I can't find it!

Anyway...

The US Centers for Disease Control and Prevention (CDC) has invited Dr. Charles Lapp of the Hunter-Hopkins Center and Bruce Campbell, founder of the CFIDS & Fibromyalgia Self-Help Program to speak on “Learning to Pace” during a free one-hour conference call on tomorrow on Thursday, October 8. The call will begin at 1 pm Pacific time / 4 pm Eastern. Prior to our talk, Dr. Elizabeth Unger of the CDC will give a brief update on the CDC’s work on CFS and our talk will be followed by Q and A. Dr. Laura Black, a colleague of Dr. Lapp, will join us for the Q and A.

To join the call, dial 800-593-9959 and key in the conference code 8266520. The call is one in a series of twice-yearly events that started in 2012.

For more details, see http://www.cdc.gov/cfs/meetings/cfspcoca.html A copy of Bruce’s slides and resources related to the talk are available on the Self-Help Program website: www.cfidsselfhelp.org Click on “Bruce’s CDC Talk” in the bottom right corner of the homepage.

I don't know if people overseas can dial an 800 number?

4pm Eastern Time is 9pm UK time, I believe.

 

[Research 1st]

CDC are talking 'Pacing' with the CDC for potential fatal disease, 27 years since the CDC created CFS?

As pacing is common sense behaviour, I'm sure America is the envy of the world with this level of progress.

 

[Sasha]

CDC are talking 'Pacing' with the CDC for potential fatal disease, 27 years since the CDC created CFS?

As pacing is common sense behaviour, I'm sure America is the envy of the world with this level of progress.

What would be interesting is if they'd relate any discussion of pacing to the anaerobic threshold work of Staci Stevens et al.

 

[SOC]

What would be interesting is if they'd relate any discussion of pacing to the anaerobic threshold work of Staci Stevens et al.

They probably will. Dr Lapp was on board with Staci Stevens' work from the very beginning. A CPET test using Stevens' protocol was an automatic part of my intake appt with Hunter-Hopkins 6-7 years ago. They were big on HR monitoring to stay below my AT. They encouraged me to get a HR monitor and use it on my trip home to manage the PEM from the trip.

 

[Sasha]

They probably will. Dr Lapp was on board with Staci Stevens' work from the very beginning. A CPET test using Stevens' protocol was an automatic part of my intake appt with Hunter-Hopkins 6-7 years ago. They were big on HR monitoring to stay below my AT. They encouraged me to get a HR monitor and use it on my trip home to manage the PEM from the trip.

Interesting!

I'd like to listen to this but not sure if I can, from the UK.

 

[SOC]

Interesting!

I'd like to listen to this but not sure if I can, from the UK.

To be honest, I doubt it's going to have anything we don't already know. It may be useful for GPs who don't know much about ME/CFS, but want to have something to offer their patients.

 

[Sasha]

To be honest, I doubt it's going to have anything we don't already know. It may be useful for GPs who don't know much about ME/CFS, but want to have something to offer their patients.

Pity they're not recording it (I asked, and they're not).

 

[Dolphin]

This is starting in a few minutes

 

[Sasha]

Can get this from the UK on 001-800-593-9959 and key in the conference code 8266520.

Just about to hear from Bruce Campbell.

 

[Sasha]

Helpful content link from Bruce:

http://www.cfidsselfhelp.org/content/CDC_Talk

Slides and text of both his talk and Dr Lapp's.

 

[SOC]

I did Bruce's course and wasn't impressed. I can see it would be very useful for people who are not pacing well and not coping emotionally with developing this dreadful illness. For me it was completely ho-hum common sense. I think his course has a place in the world of ME/CFS, but not with experienced, capable, emotionally stable patients who have spent some time at PR and know the basics of pacing.

Hopefully, I will be surprised to find that the info they're dishing out has evolved over time and has great value for us all. We can use all the help we can get.

 

[SOC]

Thinking back... I seem to remember that Bruce's course then also included a mild form of GET. Nothing harsh, certainly not hardcore, like increasing activity by 5% per week or anything like that, but pressure to try to do a bit more while still being aware of your body. That may have changed in the ensuing years. Perhaps someone who has done the course recently can enlighten us about the current philosophy.

Later:
Ah, there it is on the CFIDSSELFHELP website on the Strategies for Expanding the Envelope page

1. Extend your limits a little bit at a time

1. Return to your previous level if symptoms increase

A “little bit” typically means no more than 5% to 10%. The second guideline is based on the recognition that with all experimentation, some attempts work and others don’t, so we need a plan for what to do in the cases where the experiment fails.

Success Story

To give you an idea of how improvement unfolds, let me tell you the story of Elena Rosen. Elena has CFS but has improved over a number of years from 15% of normal to 80%.
[snip]
One part of her self-management program was to engage in mild exercise, which she decided would be walking. She writes, “With the idea in mind of setting a small, realistic goal, I made it a target to walk 1/16th of a mile every day at a very slow pace.” (That’s about the length of a football field.)

Then, once a week, if she was having a good day, she extended the distance by ten or twenty feet, increasing the distance “a little at a time, as long as I experienced no increase in my symptoms.” Over time, “I found that taking a short rest in the middle of my walk allowed me to walk even further. Now, I walk two and a half miles virtually every day.”

See what I mean? Sounds like GET to me. It's not really bad, but does seem to imply that for some inexplicable reason we're not doing as much as we can, or that by increasing activity slightly we can gain more functionality. Certainly all of us try to expand our boundaries when we feel our bodies can handle it, and this may be saying simply that, but it seems fairly obvious, like telling me to eat when I'm hungry.

 

[halcyon]

Forgot this was today. Was there anything interesting in the CDC update?

 

[Kati]

The thing about self management, CBT and GET success stories is that
- they are consistently leaving the science behind
- they are usually not performing relevant testing like viral studies, immune impairment
- they are lumping all patients together. The local clinic is basically rebranding patients with Lyme, ME and FM as Central sensitivity Syndrome.
- they are assuming that because there is a success story that everybody can improve and get better
- they assume that we have flawed coping mechanism and flawed behaviors.

I say medicine and biology before CBT and GET.

Disclosure: i did not listen to the webcast

 

[ScottTriGuy]

Graded Exercise Therapy is not a therapy.

Before I got sick with m.e., if I caught the seasonal flu for example, after those 4 or so days of being sick, I would ease back into exercise as I listened to my body, one might even say that I graded my exercise based on my recovery from the flu.

We all do this after an illness or injury. Its called common sense.

Increase in exertion capacity is a sign of recovery from any illness. It is not a therapy for m.e.

 

[Kati]

Graded Exercise Therapy is not a therapy.

Before I got sick with m.e., if I caught the seasonal flu for example, after those 4 or so days of being sick, I would ease back into exercise as I listened to my body, one might even say that I graded my exercise based on my recovery from the flu.

We all do this after an illness or injury. Its called common sense.

Increase in exertion capacity is a sign of recovery from any illness. It is not a therapy for m.e.

Much agree, Scott. if we were well tomorrow, we would all be out of our homes enjoying life. We would all have the common sense of judging for ourselves how to re-enter society and how to ease back into more demanding activites and tasks of daily living.

 

[Sasha]

I couldn't hear the phone conference very well so hung up after five minutes.

 

[SOC]

For amusement, I did a little math on the "Expanding the Envelope Story".

If you start at 15% capacity and increase your activity "a little bit" (I used 5%) every week, you could be at 100% capacity in a mere 40 weeks! If you take into consideration bad weeks and other down times so that your average "little bit" increase is only 5% every other week, it will take you 78 weeks (18 months) to be back to full capacity.

Now why didn't I think of that? Here I have been ill 11 years when a bit of gentle increasing my activity a bit would have had me back to 100% in a mere 18 months. Silly me.

Let's see... if you are a severe patient who can only walk about 20 ft (7 m) without PEM, and you increased your walking by 2.5% per week (since you're unlikely to be well enough every week to increase by 5-10%), after a year, you'd be able to walk 70 ft (21 m). Hurrah! That's valuable. But then, I'm not sure how you are going to walk only another 6 inches (15 cm) every week. What is that, half a step? So increase one step every other week? No, wait, that would be a half step out and a half step back. Well then, I guess you increase by one step in each direction once a month. Sounds like fun. But not like it's going to get me very far... another 12 steps across the house in a year.

Okay, so maybe this doesn't work for severe patients (surprise, surprise). I'm not sure how Elena got from 15% capacity (that sounds bedbound to me) to 85% capacity with her increased walking program. Surely she couldn't have been walking 300 ft (91 m) when she was at 15% capacity. She must have started her walking program when she was much more functional. I don't know how she got from 15% capacity to able to walk the length of a football field. That wasn't in the story, but might be helpful information for those who are not able to start walking at 100 yd (91 m).

I also did some math on Elena's increasing walking story. She regularly, if she had a good day, increased her walking distance by 10-20 feet. By my calculations, that means if every week was good, she increased her walking distance over the course of a year from 100 yd (91m) to 350 yd (325m). If all days weren't good (and who has all good days with ME/CFS?), then it might have taken 2-3 years to improve that much. I can see that could be considered a beneficial improvement since it's the difference between shopping at a convenience store and shopping at a small grocery store, but it probably took 2-3 years to get there, walking every day. Two to three years of GET walking every day to gain 250 yd (230 m) of walking distance. That's some serious determination.

I wonder if the same can be achieved with ADLs for those of us who couldn't waste energy walking because we couldn't even cook and clean for ourselves. Could I increase my ability to wash the dishes by washing another quarter of a dish? Increase the amount I vacuum (hoover, for you Brits) by 10 sq ft (1 sq m)? Increase my shower time by 1.5 minutes every week? It just doesn't seem to translate to anything practical. If it's all about walking increasing strength or stamina, then it sounds more like you're dealing with OI or deconditioning, not ME. Our inability to function is not about weakness, really, it's about inability to produce energy and/or a pathological physiological response to exertion.

Is it that this program is effective for chronic fatigue (the symptom) rather than ME? After all, exercise does appear to be helpful for a number of conditions that cause chronic fatigue -- OI (in the absence of ME), cardiac conditions, fibromyalgia (in the absence of ME), deconditioning, etc.

While I'm straining my brain trying to figure out GET (even the gentle GET described at CFIDSSELFHELP)...

Why don't healthy people use GET to go from 100% capacity to 500% capacity by increasing their activity 5-10% per week? Surely the premise is that an individual's body does not have a physical limit or PWME would not be expected to increase their functional capacity 10x just using GET.

 

[Kati]

Can someone who has listened to the conference call talk about what dr Unger talked about in her agency update? Thx.

 

[snowathlete]

For amusement, I did a little math on the "Expanding the Envelope Story".

If you start at 15% capacity and increase your activity "a little bit" (I used 5%) every week, you could be at 100% capacity in a mere 40 weeks! If you take into consideration bad weeks and other down times so that your average "little bit" increase is only 5% every other week, it will take you 78 weeks (18 months) to be back to full capacity.

Now why didn't I think of that? Here I have been ill 11 years when a bit of gentle increasing my activity a bit would have had me back to 100% in a mere 18 months. Silly me.

Let's see... if you are a severe patient who can only walk about 20 ft (7 m) without PEM, and you increased your walking by 2.5% per week (since you're unlikely to be well enough every week to increase by 5-10%), after a year, you'd be able to walk 70 ft (21 m). Hurrah! That's valuable. But then, I'm not sure how you are going to walk only another 6 inches (15 cm) every week. What is that, half a step? So increase one step every other week? No, wait, that would be a half step out and a half step back. Well then, I guess you increase by one step in each direction once a month. Sounds like fun. But not like it's going to get me very far... another 12 steps across the house in a year.

Okay, so maybe this doesn't work for severe patients (surprise, surprise). I'm not sure how Elena got from 15% capacity (that sounds bedbound to me) to 85% capacity with her increased walking program. Surely she couldn't have been walking 300 ft (91 m) when she was at 15% capacity. She must have started her walking program when she was much more functional. I don't know how she got from 15% capacity to able to walk the length of a football field. That wasn't in the story, but might be helpful information for those who are not able to start walking at 100 yd (91 m).

I also did some math on Elena's increasing walking story. She regularly, if she had a good day, increased her walking distance by 10-20 feet. By my calculations, that means if every week was good, she increased her walking distance over the course of a year from 100 yd (91m) to 350 yd (325m). If all days weren't good (and who has all good days with ME/CFS?), then it might have taken 2-3 years to improve that much. I can see that could be considered a beneficial improvement since it's the difference between shopping at a convenience store and shopping at a small grocery store, but it probably took 2-3 years to get there, walking every day. Two to three years of GET walking every day to gain 250 yd (230 m) of walking distance. That's some serious determination.

I wonder if the same can be achieved with ADLs for those of us who couldn't waste energy walking because we couldn't even cook and clean for ourselves. Could I increase my ability to wash the dishes by washing another quarter of a dish? Increase the amount I vacuum (hoover, for you Brits) by 10 sq ft (1 sq m)? Increase my shower time by 1.5 minutes every week? It just doesn't seem to translate to anything practical. If it's all about walking increasing strength or stamina, then it sounds more like you're dealing with OI or deconditioning, not ME. Our inability to function is not about weakness, really, it's about inability to produce energy and/or a pathological physiological response to exertion.

Is it that this program is effective for chronic fatigue (the symptom) rather than ME? After all, exercise does appear to be helpful for a number of conditions that cause chronic fatigue -- OI (in the absence of ME), cardiac conditions, fibromyalgia (in the absence of ME), deconditioning, etc.

While I'm straining my brain trying to figure out GET (even the gentle GET described at CFIDSSELFHELP)...

Why don't healthy people use GET to go from 100% capacity to 500% capacity by increasing their activity 5-10% per week? Surely the premise is that an individual's body does not have a physical limit or PWME would not be expected to increase their functional capacity 10x just using GET.

Best post this week. The closer you look at GET the more ludicrous it seems.