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

[jspotila]

Yes, I, too, would like to read your summaries of the concerns posted on PR. It would be good for communication if you would share.

I am sorry, but all this falls under the Board's confidentiality obligations.

 

[Dolphin]

Thanks to posters of posts 799-900

I have just made my way up to 900. I think I'll need to take a little break for a while. I had "abandoned" this thread all week - too many messages I'm afraid (which is a good thing as it shows people are interested and passionate about the topic of GET and CBT based on GET, etc).

I marked lots of messages from 799 on to praise/thank. But really it would be a bit silly for me to thank them all as there is so many (if this thread had a much smaller number of posts I might).

But well done to an excellent conversation so far. Hopefully I'll eventually make it to the end.

 

[justinreilly]

To Do List for CAA

Since we are not allowed to see what jspotilla told CAA, and apparently she is the only person who has handled this (both from Khaly and from Phoenix Rising), I suggest that we submit our concerns ourselves directly to CAA. This will assure that they do, indeed, know our concerns. At present, there is no real way to know whether they are not, in fact, aware of our concerns or whether they are choosing to ignore them.

As I see it, there are two ways we could do this: (1) Start a list of concerns here and everyone who agrees, sign on (which would require some work on the part of one of our members to correlate and mail to each member of the CFIDS Assn Board of Directors, or (2) Each of us write to each member of the CFIDS Assn Board of Directors on our own.

Since I am not well enough to do the work required by way no. 1, I suggest we try way no. 2, unless someone else wants to volunteer to do the work required by way no. 1.

Here is a link the the CFIDS Assn Board of Directors. Unfortunately, it appears they have not updated their list, since Spotilla is still listed as Chairman, and she told us her term ended in December. Still, it's the best we can do:

http://www.cfids.net/about/board-of-directors.php

We could mail our letters addressed individually to Board Members to the CFIDS Assn address, since we do not have individual addresses.

Is there anyone who would like to begin?

I'm not sure what cfids.net is. It seems to be a parallel site to cfids.org, though cfids.net also says 'center for immune dysfunction' as well as 'CAA' and looks like it has some out of date content. don't know what the point of it is. on cfids.org the board list is up to date:
http://www.cfids.org/about/board-of-directors.asp

I personally don't doubt that Jennie has passed the concerns along. And staff reads, or has at least in the past read, this thread. The pacing article, for example, was taken down immediately after a heating posting spree.


Here are my concerns/ wishes for Jennie to pass on:

1) Put the maximum possible pressure on CDC to appoint an outside expert as the new Chronic Viral Diseases Branch Chief. Someone such as Nancy Klimas, Leonard Jason, Paul Cheney, Dan Peterson, etc. An ostensibly well-meaning CDC insider is not acceptable in view of CDC's long sordid history re: ME. This is a very rare opportunity to make a huge difference in the federal response for years to come. An outside expert running the show could well lead to a cascade effect of increasing medical and social progress.

2) Pull down everything on website about the disease and its treatment (unless it's truly been reviewed to ensure accuracy and the advancement of patients' interests).[edited thanks to feedback from Cort Johnson]

3) Put up introductory excerpts of Canadian Consensus Criteria on home page with a link to the full article. [edited thanks to feedback from Cort]

4) Divide up CCC into sections and have those be the main reference/ info pages for site.

5) Substitute 'ME/CFIDS' (or 'ME') for 'CFS' and 'CFIDS' (including in CAA name).

6) Begin and quickly complete review of all CAA materials, on website and in print, for accuracy and to make sure they advance the interests of patients. If it is not possible to do this quickly, then agree to allow volunteers to review and edit all CAA materials. This should begin with everything on the website and the CME.

7) When CME has been edited, renew credit-approval for it (as credit-approval has lapsed).

8) Aggressively publicize, on the website and in contacting media exactly how the US and UK government have been persecuting ME patients. This includes declaring the Oxford Criteria and any studies based upon it to be totally invalid.

9) Secure agreement from Kim McCleary to do all the above and to otherwise truly advocate for patients. If she agrees, set her salary at $100,000 for 2011 with the assurance that if the board decides she has done an exemplary job, her salary will be raised to $150,000 the following year. If Ms. McCleary can not agree to this, do not renew her contract and begin searching for a replacement.

10) Aggressively lobby US Congress and HHS for appropriate funding of and response to ME epidemic. This includes a 100 fold increase in funding; appointment of an outside expert as head of CDC Chronic Viral Diseases Branch; change of name to ME or ME/CFIDS and Congressional investigation into HHS misfeasance.

11) Take names of CAA employees off of inaccurate and abusive material published by CDC including the CDC CME and the Reeves Definition.

12) After the preceding is done, start going after purveyors of misinformation such as CDC, NIH, UK NHS, UK NICE, British psychiatrists, journals and textbooks.

13) Include pictures of wheelchair- and hospitalbed-bound patients on the homepage in addition to the current pictures of patients who look depressed but otherwise healthy.

 

[parvofighter]

CFIDS Assn Board of Directors Emails?

Just peeking in briefly here... a little overwhelmed. However - does someone have the email addresses of the Board - could you post them here?

CFIDS Assn Board of Directors Emails:

Thanks!

Parvo:Retro smile:

 

[Dolphin]

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 dont 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 arent 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 dont 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 shouldnt 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 dont 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.

Belated thanks, teejkay.:Retro smile:

Lots of insightful posts in this thread - too many for me to praise individually I think.

 

[Dolphin]

By dividing the revenue from membership dues by the $35 per member dues amount, I calculate there were only 3,390 members in 2008, a drop of 85% from 1991. CAA has since changed to technically eliminate memberships for tax reasons, but sends $35 donors the 'Solve CFS' newsletter. If CAA were able to attract 23,000 $35 donors by making changes to increase confidence in them, they would receive $805K per year from these $35 donations alone, instead of the $119K it received in 2008.]

The membership fees will give an idea. But it should be remembered that different groups knock people off more quickly than others. For example with Action for M.E. and the ME Association, you get a letter 11-12 months after you last paid and you can be knocked off very quickly if you don't pay.

The CAA seem to be more relaxed about it. [Aside: I think they should probably also have sent a specific letter saying people were going to be taken off if they didn't pay. It took me a while to realise a couple of times my membership had lapsed (In my defense, as I recall, they put the due date on the outside but I get my parents to open my mail as wripping envelopes hurts my wrists)].

So if somebody paid their membership twice in three years, for one of the years their figures wouldn't show up in the membership dues. They might even give extra money but that might show up as a donation rather than membership fees. Also if somebody gave a reasonably big donation, if there is no formal membership system, one might see them as effectively being a member.

One issue groups have to fight is that there is so much free information on the internet now compared to 1991 than some people can be inclined to just take the free stuff.

 

[justinreilly]

Thank you, Justin. Yes, you are right. It would seem that the CFIDS Assn (CAA) has been told when we have sent our concerns to Ms. Spotilla while she was Chairman of their Board of Directors, but unfortunately I keep receiving messages from people defending the CAA by saying they have no way of knowing our concerns. I have grown impatient with that argument and would like to put an end to it. I think we should send our concerns directly to each member of the CAA Board of Directors. It cannot hurt to tell them again.

I am surprised about the CFIDS dot net vs. CFIDS dot org situation. I appreciate you pointing that out. All I did was google CFIDS Assn and up popped CFIDS dot net, which I posted. The CFIDS dot org one certainly seems to be THE one, so that's the one we should use.

I think we have a good start here, Justin, with your list:



As I said, I think we should send our concerns directly to each member of the CFIDS Assn Board of Directors. If you are agreeable, I'll do just that. If anyone else wishes to add his or her name to this listing, or if anyone wishes to add to the above list, please let me know.

Please include my list if/when you send yours in to the board members.

 

[Dolphin]

HJ writes: The agency as a whole [the CDC] also grew more sophisticated about controlling the flow of information about the disease and its scientists' activities. It did so by using a lot of in-house marketing and public relations expertise, building a website that brims with disinformation and engaging the CAA to educate MDs and further burnish the cfs brand in the U.S. and elsewhere. Reeves held sway over the bitterly contested empirical definition and the way-out-there genomic study, which in turn led to the infamous press conference of 2006, in which Reeves and his collaborator Suzanne Vernon proposed that the disease was under diagnosed by 80 percent, that treatment was available, and that cfs was caused by a genetic predisposition to being unable to handle stress combined with a history of child abuse.

Is that the Kerr genomic study HJ is talking about?

No, nearly all of the Kerr research is on gene expression research which is different from genetic disposition research.

The CDC CFS group under Reeves tended to mainly refer to in-house research and this is one of their own studies.

The thing is that they only measured HPA axis genes so that's all they were going to find.
Also, it was an empiric definition (Reeves, 2005) study which in my opinion makes it fairly meaningless in terms of what it tells us about proper CFS.

 

[jspotila]

Sorry, Parvo. I do not have mailing addresses or email addresses for the CFIDS Assn Board members. Maybe Ms. Spotila has them and will share them with us. My intention is to print out the concerns voiced by members here and mail them individually in envelopes addressed to each board member at the CFIDS Assn mailing address. People keep telling me no one has told CAA about our concerns, and I have gotten tired of hearing this, so I intend to tell them again.

I'm not sure who has been telling you that CAA does not know the concerns expressed here, but that is not true. However, if you wish to write directly to Board members, the best way to do it is to send a letter to the office addressed to the Board Chairman, Adam Lesser. The staff will forward the correspondence on. Board members do not have cfids.org mailing addresses, and I cannot disclose any personal contact information for Board members.

 

[Dolphin]

Eleanor Stein - Psychiatric Treatment Guidelines (Good)

HOW IS THIS FOR CBT?

Although Cognitive Behavior Therapy (CBT) is widely recommended for patients with
ME/CFS, it is far from clear whether cognitive behavior therapy is helpful for most
patients.

The rationale for using CBT in ME/CFS is that inaccurate beliefs (that etiology
is physical) and ineffective coping (activity avoidance) maintain and perpetuate CFS
morbidity (Deale et al, 1997;Sharpe et al, 1996).

However, it has never been proven
that these illness beliefs contribute to morbidity in CFS.

Where correlations do exist it
is possible, even likely, that beliefs in physical etiology are correct and that activity
avoidance is necessary for the more severely ill (Lloyd et al, 1993;Ray et al, 1995).


Of the 6 reported studies using CBT in ME/CFS two selected patients as defined
by the Oxford (Deale et al, 1997;Sharpe et al, 1996) one using the Australian criteria
(Lloyd et al, 1993) and one using the Fukuda criteria with the exception of the criterion
requiring four of eight additional symptoms to be present (Prins et al, 2001).

These
methods of patient selection allow for considerable heterogeneity and inclusion of psychiatrically
ill patients with fatigue.

Therefore, the results may not be applicable to the
average Fukuda or Canadian defined patient.

Of the remaining two studies using valid
selection criteria, one found no benefit of CBT (Friedberg & Krupp, 1994).

The only study
reporting benefit (improved functional capacity and decreased fatigue) was conducted in
adolescents (Stulemeijer et al, 2005).

It is important to note that no CBT study has reported that patients have been
improved enough to return to work nor have they reported changes in the physical symptoms
of CFS eg. muscle pain, fever, lymphadenopathy, headache or orthostatic intolerance.


Furthermore, clinical experience suggests that trying to convince a patient with
ME/CFS that s/he does not have a physical disorder and should not rest when tired leads
to conflict in the doctor-patient relationship and poor outcome for the patients. Therefore
it would be prudent to await further research before recommending this CBT approach.
Psychiatric Treatment GuidelinesE. Stein, 2005

This can be read at: http://www.mecfs.org.au/?q=node/33 or http://fm-cfs.ca/Psychiatry-overview.pdf

 

[Dolphin]

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

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]

This is an over-the-top statement.
These outcome measures have invariably not been used in the published GET trials for CFS.

But doctors and other professionals could easily be taken in, as one could imagine it making such a difference in an ordinary (non-ME/CFS) person.

The reference is:
78. Stevens S. A realistic approach to exercise and exercise rehabilitation in CFS. Program and abstracts of the Advances in Understanding and Treating CFS and FM Conference; May 15, 2004; Salt Lake City, Utah.

I think it's most likely Staci Stevens just claimed these things.
Her program didn't come out well in the Jason et al. (2007) four-armed trial and it looks to me like they are modify it in their latest paper and suggest exercise should be done in units of less than 2 minutes.

 

[starryeyes]

Since we are not allowed to see what jspotilla told CAA, and apparently she is the only person who has handled this (both from Khaly and from Phoenix Rising), I suggest that we submit our concerns ourselves directly to CAA. This will assure that they do, indeed, know our concerns. At present, there is no real way to know whether they are not, in fact, aware of our concerns or whether they are choosing to ignore them.

As I see it, there are two ways we could do this: (1) Start a list of concerns here and everyone who agrees, sign on (which would require some work on the part of one of our members to correlate and mail to each member of the CFIDS Assn Board of Directors, or (2) Each of us write to each member of the CFIDS Assn Board of Directors on our own.

Since I am not well enough to do the work required by way no. 1, I suggest we try way no. 2, unless someone else wants to volunteer to do the work required by way no. 1.

Here is a link the the CFIDS Assn Board of Directors. Unfortunately, it appears they have not updated their list, since Spotilla is still listed as Chairman, and she told us her term ended in December. Still, it's the best we can do:

http://www.cfids.net/about/board-of-directors.php

We could mail our letters addressed individually to Board Members to the CFIDS Assn address, since we do not have individual addresses.

Is there anyone who would like to begin?

Good idea WD, but which link to do we use on this link:
http://www.cfids.net/about/board-of-directors.php ?

I'm super fogged atm.

 

[starryeyes]

I'm not sure what cfids.net is. It seems to be a parallel site to cfids.org, though cfids.net also says 'center for immune dysfunction' as well as 'CAA' and looks like it has some out of date content. don't know what the point of it is. on cfids.org the board list is up to date:
http://www.cfids.org/about/board-of-directors.asp

I personally don't doubt that Jennie has passed the concerns along. And staff reads, or has at least in the past read, this thread. The pacing article, for example, was taken down immediately after a heating posting spree.


Here are my concerns/ wishes for Jennie to pass on:

1) Put the maximum possible pressure on CDC to appoint an outside expert as the new Chronic Viral Diseases Branch Chief. Someone such as Nancy Klimas, Leonard Jason, Paul Cheney, Dan Peterson, etc. An ostensibly well-meaning CDC insider is not acceptable in view of CDC's long sordid history re: ME. This is a very rare opportunity to make a huge difference in the federal response for years to come. An outside expert running the show could well lead to a cascade effect of increasing medical and social progress.

2) Pull down everything on website (unless it's truly been reviewed to ensure accuracy and the advancement of patients' interests).

3) Put up Canadian Consensus Criteria on home page.

4) Divide up CCC into sections and have those be the main reference/ info pages for site.

5) Substitute 'ME' or 'ME/CFIDS' for 'CFS' and 'CFIDS' (including in CAA name).

6) Begin and quickly complete review of all CAA materials, on website and in print, for accuracy and to make sure they advance the interests of patients. If it is not possible to do this quickly, then agree to allow volunteers to review and edit all CAA materials. This should begin with everything on the website and the CME.

7) When CME has been edited, renew credit-approval for it (as credit-approval has lapsed).

8) Aggressively publicize, on the website and in contacting media exactly how the US and UK government have been persecuting ME patients. This includes declaring the Oxford Criteria and any studies based upon it to be totally invalid.

9) Secure agreement from Kim McCleary to do all the above and to otherwise truly advocate for patients. If she agrees, set her salary at $100,000 for 2011 with the assurance that if the board decides she has done an exemplary job, her salary will be raised to $150,000 the following year. If Ms. McCleary can not agree to this, do not renew her contract and begin searching for a replacement.

10) Aggressively lobby US Congress and HHS for appropriate funding of and response to ME epidemic. This includes a 100 fold increase in funding; appointment of an outside expert as head of CDC Chronic Viral Diseases Branch; change of name to ME or ME/CFIDS and Congressional investigation into HHS misfeasance.

11) Take names of CAA employees off of inaccurate and abusive material published by CDC including the CDC CME and the Reeves Definition.

12) After the preceding is done, start going after purveyors of misinformation such as CDC, NIH, UK NHS, UK NICE, British psychiatrists, journals and textbooks.

13) Include pictures of wheelchair- and hospitalbed-bound patients on the homepage in addition to the current pictures of patients who look depressed but otherwise healthy.

Bravo Justin. This is excellent. I want to add my name to the list.

 

[Starlight]

This is an over-the-top statement.
These outcome measures have invariably not been used in the published GET trials for CFS.

But doctors and other professionals could easily be taken in, as one could imagine it making such a difference in an ordinary (non-ME/CFS) person.

The reference is:
78. Stevens S. A realistic approach to exercise and exercise rehabilitation in CFS. Program and abstracts of the Advances in Understanding and Treating CFS and FM Conference; May 15, 2004; Salt Lake City, Utah.

I think it's most likely Staci Stevens just claimed these things.
Her program didn't come out well in the Jason et al. (2007) four-armed trial and it looks to me like they are modify it in their latest paper and suggest exercise should be done in units of less than 2 minutes.

am new to this forum, 1st post , I am delighted to see such attention to detail,it is so important to challenge these assertions about what we know can be so damaging for us.Any idea when the second paper is due ? thanks Tomk

 

[starryeyes]

Sorry, Parvo. I do not have mailing addresses or email addresses for the CFIDS Assn Board members. Maybe Ms. Spotila has them and will share them with us. My intention is to print out the concerns voiced by members here and mail them individually in envelopes addressed to each board member at the CFIDS Assn mailing address. People keep telling me no one has told CAA about our concerns, and I have gotten tired of hearing this, so I intend to tell them again.

Wow! Thank you Wild Daisy. You Rock GF!

Welcome Starlight. Nice name.

 

[starryeyes]

No, nearly all of the Kerr research is on gene expression research which is different from genetic disposition research.

The CDC CFS group under Reeves tended to mainly refer to in-house research and this is one of their own studies.

The thing is that they only measured HPA axis genes so that's all they were going to find.
Also, it was an empiric definition (Reeves, 2005) study which in my opinion makes it fairly meaningless in terms of what it tells us about proper CFS.

Thank you for explaining that Tom. And I see you've added
"11 surveys which found high rates of adverse reactions with GET" to your Sig. Cool.

 

[jspotila]

Good idea WD, but which link to do we use on this link:
http://www.cfids.net/about/board-of-directors.php ?

I'm super fogged atm.

Please see my post 1020 about the best way to contact the Board.

 

[justinreilly]

Posted by teej.
From CAA CME:

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]

This is an over-the-top statement.
These outcome measures have invariably not been used in the published GET trials for CFS.

But doctors and other professionals could easily be taken in, as one could imagine it making such a difference in an ordinary (non-ME/CFS) person.

The reference is:
78. Stevens S. A realistic approach to exercise and exercise rehabilitation in CFS. Program and abstracts of the Advances in Understanding and Treating CFS and FM Conference; May 15, 2004; Salt Lake City, Utah.

I think it's most likely Staci Stevens just claimed these things.
Her program didn't come out well in the Jason et al. (2007) four-armed trial and it looks to me like they are modify it in their latest paper and suggest exercise should be done in units of less than 2 minutes.

I was distressed to see this extremely misleading statement in CAA's CME. Thanks for examining it, Tom.

 

[justinreilly]

I'm not sure who has been telling you that CAA does not know the concerns expressed here, but that is not true. However, if you wish to write directly to Board members, the best way to do it is to send a letter to the office addressed to the Board Chairman, Adam Lesser. The staff will forward the correspondence on. Board members do not have cfids.org mailing addresses, and I cannot disclose any personal contact information for Board members.

Jennie-

If I want to contact the board or a member by email, what would you suggest? Should I email CAA and ask them to forward it on?

 

[Dolphin]

am new to this forum, 1st post , I am delighted to see such attention to detail,it is so important to challenge these assertions about what we know can be so damaging for us.Any idea when the second paper is due ? thanks Tomk

Thanks very much Starlight and also justinreilly.

If you are referring to the latest Staci Stevens paper I referred to, it's briefly discussed here: http://www.forums.aboutmecfs.org/sh...l-for-Physical-Therapist-Management-of-CFS-ME

The reason I wasn't definite if it has changed or not is that I can't see any times mentioned in the previous version in the Jason et al. (2007) paper (abstract in above link) but in the latest paper, they appear to be shorter than anyone I've heard mention times before which makes me things there has been a change:

From latest paper:

Exercise Interventions

Exercise interventions for people
with CFS/ME must be carefully customized
to reflect the unique needs
of each individual. The existing literature
mentions 2 critical issues in
prescribing physical activity for people
with CFS/ME. First, clear communication
between the individual and
the physical therapist about the effects
of the exercise program is critical
to avoid the perception that
physical activity has been increased
because of increased physical capacity
instead of the self-fulfilling prophecy
associated with starting an exercise
program. Second, aerobic system
impairments associated with CFS/ME
result in functional impairments that
may not be amenable to training in
people with CFS/ME compared with
people who are sedentary.

We assert that exercise interventions
for people with CFS/ME require a
combination of compensation and
rehabilitation approaches to physical
training in which training begins with
activities that provide stress to the
unimpaired anaerobic energy system
before the impaired aerobic energy
system is stressed. Therefore, we advocate
a training approach in which
initial therapeutic activities are short
duration, low intensity, and directed
toward specific contributing impairments
in body structures and functions.
Because oxidative phosphorylation
serves as the primary metabolic
pathway in activities lasting longer
than 2 minutes (Fig. 2), aerobic sys-
tem impairments in people with
CS/ME would seem to limit activities
longer than 2 minutes because of the
risk of developing symptoms and functional
deficits associated with PEM.

Therefore, we recommend therapeutic
activities that last less than 2
minutes and are conducted at an intensity
consistent with an HR that is
10% below the HR at the AT or RPEs
below 13 to 15. Previous studies
demonstrated that reducing exercise
time and intensity is effective in reducing
symptoms of PEM in people
with CFS/ME.60 These recommendations
regarding duration and intensity
are flexible; clinicians should be
guided by the individuals immediate
and latent responses to therapeutic
activities to determine appropriate
exercise volume.

We recommend that activities initially
consist of stretching and activerange-
of-motion (AROM) exercises
to improve region-specific strength
and flexibility, because deficits in
strength and flexibility may be the
source of increased energy expenditure
through suboptimal movement
mechanics. The specific exercises incorporated
into the flexibility and
AROM program depend on the clinicians
thorough examination and
evaluation of potentially contributing
pathomechanics. After participating in
a stretching and AROM program that
does not reproduce symptoms of
PEM, people may advance to strength
training in which the focus is on shortduration,
low-intensity strengthening
with maintenance of adequate rest intervals.
Clinicians should use caution
during the creation and progression of
the resistance training program because
the safety and effectiveness of
these interventions in people with
CFS/ME require additional research.
Finally, people with CFS/ME may advance
to short-duration, low-intensity
interval training. As starting criteria,
the duration of the intervals should
not exceed 2 minutes, and the intensity
should not exceed an HR that is
10% below the HR at the AT. Progression
of interval training should involve
increasing the number and intensity
of intervals while maintaining
a training range that prevents excessive
use of the impaired aerobic system
in people with CFS/ME. Interval
training should involve functional retraining
whenever possible, according
to the physical therapists evaluation
of the individuals disablement. When
short-duration interval training can
be completed successfully, clinicians
should consider initiating shortduration
aerobic interval training,
which can be advanced in an incremental
manner according to peoples
symptoms, as described elsewhere.39

Despite the importance of exercise
to address physical conditioning in
some people with CFS/ME, the healthrelated
quality of life of people with
CFS/ME is only weakly correlated
with exercise capacity measurements.
This fact underlines the importance
of multimodal treatment, including
individual education and pacing selfmanagement,
to address the activity
and participation limitations in people
with CFS/ME.

This was the exercise program in the Jason et al, 2007 study (abstract at: http://www.forums.aboutmecfs.org/sh...l-for-Physical-Therapist-Management-of-CFS-ME ):

Anaerobic Activity Therapy (ACT)

The ACT treatment focused on developing individualized,
constructive and pleasurable activities accompanied by
reinforcement of progress. Staci Stevens, an exercise
physiologist, who has previously worked on similar interventions,
supervised this condition.

In order to gain an assessment of flexibility and strength
at both pre- and post-test, participants in all conditions
completed the shoulder flexibility test, which measures the
flexibility in the right and left shoulders. All participants
also completed the sit and reach test, which is the most
widely used measure of flexibility and a primary component
of most physical fitness tests. The test is designed to
measure the extensibility of the hamstring muscles and the
lower back articulations by evaluating the maximal reach
an individual can make in a seated position. This test has
excellent testretest and intra-rater reliability (Gabbe,
Bennell, Wajswelner, & Finch, 2004). Finally, all participants
completed the hand dynamometer, which measures a
persons grip strength and is a good measure of loss of
work capacity (Chengalur, Smith, Nelson, & Sadoff, 1990).
It is fast, easy to perform, and produces a reliable report
that is simple to record (Innes, 1999). Information from
these tests were helpful in guiding the therapists 13-session
protocol, which is summarized below.

Sessions 13. The first three sessions involved engaging
participants in therapy and offering them a detailed
treatment rationale. The intervention was described to
participants as involving activity scheduling and progress
assessments. The treatment plan involved three phases:
engagement and education, exercise prescription and
monitoring, and maintaining functional gains. Behavioral
goals for the program were explained to the participants
and included energy system education, redefining exercise,
prescribing appropriate exercise, increasing selected daily
physical activities, and improving quality of life. The
participants were assisted in translating these principles to
certain physical activities employed in daily living. Participants
were shown the principle of specificity in training
for achieving functional gains and educated about its
integral role within the exercise prescription.

After learning to acknowledge the reality of their
symptoms, participants received an explanation regarding
the benefits of the pragmatic rehabilitative approach as well
as the exercise model. Exercise progression was also
described at this time. Participants were informed about the
importance of gradually increasing anaerobic activity levels,
and were asked to complete a daily exercise diary.
Participants were requested to identify any goals and/or
problems that they were experiencing with regards to
exercise compliance.

Sessions 47. The self-monitoring diaries were reviewed
and the rationale for treatment was evaluated. The aim was
for behavioral homework to reinforce gradual, consistent
increases in selected physical activity and discourage rapid
fluctuations in activity. Preliminary targets were set at a
safe, achievable level to maximize the likelihood of success.
Each individual was given an exercise program that
included both pictures and descriptions. Additionally,
flexibility and exercise program guidelines were provided
along with an exercise diary that detailed each program.
This diary had to be attended to daily, and the exercise
frequency was fixed at three times per week. The participants
were informed that some amount of muscle soreness
should be expected as a result of the exercise activity.
Participants were also taught the difference between muscle
soreness that may be a result of the exercise program
and muscle pain. Participants were urged not to progress
too quickly by adding their own exercises or excessively
increasing intensity levels within normal daily activities.
The goal was to reinforce gradual increases in activity
rather than to promote sudden amplifications. As an
example of stretching and strengthening, the participant
would start with one set of four repetitions for each exercise.
If the patient was successful with this assignment and
felt no physical repercussions or delayed recovery
response, they would then be encouraged to gradually
progress until there was one set of eight repetitions was
reached. Next, the participant would increase to two sets,
starting at two sets of four repetitions.

Session 813. Homework was reviewed, problems were
identified and dealt with, and targets were set for the following
week. Preparations were continued for the
maintenance of functional gains. New targets were established
only after habituation was achieved to existing ones
or if the participant consistently achieved his or her goals
for a period of two weeks. The therapist conveyed a
positive outlook, and all achievements were warmly reinforced.
In depth analyses of in vivo activity and symptom
records confirmed behavioral progress and identified
potential and actual behavioral setbacks. As a result, new
behavioral prescriptions with scheduling modifications
were developed. In these final sessions, strategies for preventing
and dealing with setbacks and relapses were
rehearsed. The importance of maintaining the principles of
therapy after termination were also reinforced.