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

[oerganix]

Yes, drug companies wouldn't get away with this ("We know the other protocol for taking this drug is unsafe but this one is perfectly safe even though we haven't actually really researched it on many patients. Just trust us").

Yes, good points.

A general problem I have with exercise programs for the illness is that one doesn't know what may come up later in the day: most people have others who can create demands somewhat out of the blue e.g. children, partner, relatives, pets (e.g. get ill, dirty, etc). Perhaps responsibilities to do with a job. Or something happens where you live (a problem of some sort) or any other random or accidental event. If you've already used up a lot of your energy quota for the day exercising you can then over-do it. While it's hard to do a few exercise sessions across the day as that might mean a lot of showering, changing, etc.

For example, you start walking for five minutes or whatever. You gradually realise you might be able to work up to 10 minutes after a period. However, then you're hit with something later in the day one day which means you've actual overdone it. While if you hadn't done the walking or hadn't increased from five minutes, you might be ok. Keeping some energy "in the tank" seems to me can be safer. This is an idea in my head that isn't fully developed.

Quite right. Most of us also have lots of stuff that hasn't been done...a long "to-do" list that is never completed, so the idea that we should waste some of our energy on exercise is just cultish thinking...the cult of "exercise is good for you".

Also, denialists and non-understanders need to grasp the concept of our "energy tanks". We are not like batteries that slowly weaken. We are like gas tanks that, once emptied, have nothing left.

 

[The Phantom]

How's the CAA doing?

There is an interesting discussion relating to the original topic of this thread (How's the CAA doing?) here:
http://www.forums.aboutmecfs.org/sh...tions-amp-the-Overlapping-Conditions-Alliance

And I also agree with tomk's point that the problem with exercise programs is that we may need the energy we expend in trying to exercise more for other unexpected tasks later in the day or the week. So GET is dangerous.

 

[Dolphin]

Quite right. Most of us also have lots of stuff that hasn't been done...a long "to-do" list that is never completed, so the idea that we should waste some of our energy on exercise is just cultish thinking...the cult of "exercise is good for you".

Also, denialists and non-understanders need to grasp the concept of our "energy tanks". We are not like batteries that slowly weaken. We are like gas tanks that, once emptied, have nothing left.

(My bold) Yes, I think this is one of the things we're fighting. All around us in society, the message is promoted with (almost?) religious zeal that exercise is good for you.
If you exercise, you're good and if you don't exercise, you're like a "sinner" who hasn't seen the light.

We're unlikely to change the world's view with regard to exercise in general which is why specific information for the illness needs to be clear.

 

[rebecca1995]

...All around us in society, the message is promoted with (almost?) religious zeal that exercise is good for you...
.

Indeed. At least in the US, that's partly because something like 1/3 of adults are obese. Now that scientists are questioning whether exercise results in weight loss, I bet mainstream medicine will place less emphasis on it for the general public. It'll be interesting to see if there's a concomitant decrease in how strongly doctors and the CAA promote exercise as a treatment for ME/CFS.

The sad thing is, there's never been any credible evidence--a well-designed study using the Canadian criteria--that exercise improves function in ME/CFS.

It's a shame when Zeitgeist substitutes for scientific data as the basis for an institution's position.

 

[Angela Kennedy]

Indeed. At least in the US, that's partly because something like 1/3 of adults are obese. Now that scientists are questioning whether exercise results in weight loss, I bet mainstream medicine will place less emphasis on it for the general public. It'll be interesting to see if there's a concomitant decrease in how strongly doctors and the CAA promote exercise as a treatment for ME/CFS.

The sad thing is, there's never been any credible evidence--a well-designed study using the Canadian criteria--that exercise improves function in ME/CFS.

It's a shame when Zeitgeist substitutes for scientific data as the basis for an institution's position.

Oh my goodness, you've hit the nail right on the head there, Rebecca!

 

[Dolphin]

"Please remember that the CME states that exercise can be very damaging to CFS patients and that patients should not exercise to the extent that they ncrease their symptoms. So if you couldn't exercise without getting worse -and it sounds you couldn't then they absolutely wouldn't ask you to. For very ill patients they simply talked about 'range of motion' exercises such as moving your arms up and down and grasping things. I assume that's what they would have reccommended to you - hopefully those 'exercises' would not have caused you organ damage."

I am afraid you are wrong as even mild stretching exercises were bringing on heart symptoms but not till later that day and if I had not been so aware of my body I may not have made the connection. It was only through strict discipline in avoiding all absolutely necessary movements that I stabilised my condition. Besides any available energy should be kept for the body to use to start to recover, and then once one is in recovery, it is not necessary to use a graded program. So how do these doctors know for sure we are in a recovery state? Any interference by doctors regarding movement is unwarrented and inappropriate. PWC already have to cope with guilt over their activity levels. It shoud be be entirely under their own control how much or how little they do. It looks pretty ominous to me that this still is an issue and we are not being listened to.

Yes, guilt would seem like a good way to describe it. Guilt for not being able to care for their children as much as they'd like, similarly uneven relationship with partner, other relatives and people in their lives; guilt about state of one's house; guilt about one's appearance (not able to spend as much time/energy on it as would like) incl. if putting on weight as inactive; guilt for needing supports of one sort or another incl. financial as not able to work much or at al, etc. There are so many pressures to push oneself to the maximum which is not a good management strategy.

 

[Dolphin]

Yep silly me, I'm gonna jump into the fray with my opinion once again. Please forgive my redundancy, but I feel very strongly about this issue. Had I known 16 years ago what I know today, I would not have become so severely ill. Pacing would have spared the progression....GET would have contributed to a progression....And that's basically why I feel so strongly about this topic. Currently, no amount of cautious GET will improve my condition....it will in fact put me back into that deep abyss. And this is true for the vast majority of us.

GET as a viable treatment for ME/CFS seems like propaganda to me. There is no justification to continue supporting it on any level when so few benefit from it....and the majority are severely damaged by it. The vast majority of us and some of our best researchers know without a doubt that it's deadly for this disease. GET for us is like treating Diabetes with sugar (but much worse). But hey....maybe if the diabetic had a Graded Sugar Consumption program (GSC), they could work back up to a full RDA recommendation for daily sugar. Pay no mind to the numbness in your feet because that's just feeding into your somatoform disorder.

Most doctors don't even believe in ME/CFS....the ignorance around appropriate treatment of this disease is vast. Supporting GET as a viable treatment recommendation only supports that ignorance and it gives doctors a way out of their feelings of powerlessness and inadequacy by providing an easy (yet disastrous) treatment option for them, while causing extreme damage to us. We have been in an uphill struggle for years to banish the propaganda of ME/CFS being a psych disorder. If we lose that struggle the price will be great! The price has already been much too great. Supporting GET on any level only supports that propaganda and is a huge disservice to our community as a whole. Since it's but a minority that might be helped by GET, yet the majority are damaged beyond repair, why in the world is any manner of this treatment even considered? It seems to me that our advocacy groups should not be even hinting of GET as a treatment option. Is the potential benefit so great for a few, that it's worth the price of damaging the majority of us beyond repair. The bottom line is.....the extremely detrimental risks of GET far FAR outweigh the potential for a small amount of benefit....so why in the world do anything other than condemn the practice entirely?

Well said.

 

[Dolphin]

Thank you, Jennie, for letting us know the Toolkit has been removed--and thank you, CAA, for removing it!

As a severe patient, I want to address a section of the CME that Orla brought up (thank you, Orla):

A subset of people with CFS are so severely ill that they are largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.

Focusing on improving flexibility and minimizing the impact of deconditioning so patients can increase function enough to manage basic activities is the goal with severely ill patients.
http://cme.medscape.com/viewarticle/581527_8

The CME is talking about me. I don’t consider myself bedridden because I can walk to the bathroom (and sometimes to another room). I don’t have to use the bedside commode anymore unless something extra is happening that uses up my energy, like a rare trip to the doctor or someone visiting. Still, I'm very severe.

Let’s look at the CME advice as it applies to a basic daily activity: hair washing.

I can’t wash my hair. I don’t have enough energy for the several minutes of sustained arm movement required to shampoo my hair, rinse it, condition it, rinse it again, wrap it in a towel, and comb it. It’s especially difficult for me to sustain arm movement in an upright position, like when seated on a shower chair. (This is the main reason why I can't shower at all and must settle for wiping off with a washcloth in bed.)

I can, however, brush my hair. I sit on the edge of my bed and brush it 5-7 strokes. At that point I get post-exertional fatigue in my muscles and can’t hold up my arms anymore, so I put the brush down and rest. It’s not that I’m afraid to move my arms (kinesophobia); it’s that I’m physically unable to until they recover with rest. Sure, I could push myself to brush my hair 15-20 strokes, but that would lead to sacrificing another physical activity, such as lifting a book down from a shelf. I can’t do both.

Now, the purveyors of CME advice might say something like, “We want to get you more functional! In addition to brushing your hair, use your arms to do 10 repetitions with a resistance band. The next week do 12. After gradually increasing repetitions, you should be able to wash your hair in a month or two.”

Wrong. After I forced myself through the first round of exercises, my arms would be so weak and rubbery that I wouldn’t be able to lift them to brush my own hair for the next few days. I would have to ask someone else to do it, which I hate. It’s horribly demeaning and infantilizing to depend on others for care of your own body. Why would I want to give up the small amount of self care it took months and years to regain?

In other words, adopting the philosophy outlined in the CME would result in LOSING activities of daily living--a fact that directly contradicts the CME’s claim: “Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.”

Like so much of the CME, and CAA literature in general, this sentence conveys a false idea: that exercise leads to higher activity.

What scientific evidence is there that exercise improves function in severely ill patients? We don’t need exercise, we need energy.

Going through the CME line by line, tweaking exercise references is useful, yes. We patients can edit sentences, take out paragraphs, replace one word with another. But a better solution is for the CAA to fundamentally shift its position on exercise away from mainstream notions, toward the actual experiences of the patient base.

A change in the CAA’s core ideology will take care of the details in its brochures.

Good points.

Regarding graded activity/exercise for CFS, the evidence from RCTs isn't there for the severely affected. What evidence that exists is for the moderately and mildly affected. However there are lots of flaws with the evidence. For example, papers are showing that people aren't doing any more activity after doing CBT which involves regularly walks - they're substituting one activity for another. These patients can report on questionnaires that their "fatigue" and "physical functioning" is improved but this should be taken with a large grain of salt given they aren't doing any more activity in total. Also other symptoms apart from fatigue are generally not measured.

 

[lansbergen]

Moderator Note: Reference deleted because it was felt to be offensive to Dutch forum members.


Maarten, do you realise that includes all dutch members of this forum and their ancestors?

What about all the other dutch people that suffered in concentrationcamps?

 

[Mark]

Moderator note: Maarten these last few posts about Holland have nothing to do with the CAA, which is the subject of this thread of course, and the majority of them have nothing to do with ME/CFS. The part that does concern ME/CFS, referring to your website, doesn't seem to have anything to do with this thread either. Some of the comments are also clearly offensive to Dutch people and the posts are in breach of several forum rules. Please would you remove these two posts, you may post them on your own site of course but it isn't appropriate here. If you don't remove the inappropriate material soon I will delete both posts in their entirety, this material just isn't appropriate here.

 

[Mark]

Maarten I do understand that these issues are all connected one to another for all of us, and that your own story connects all these issues, but I can't really see how this is anything other than off topic re: the CAA, and there's no question that this material was offensive for at least some dutch readers, even if not to yourself, since it has been reported as such.

I'm sure you understand that I must aim to be objective, and having received a complaint I considered the forum rules, and it's quite clear to me that at least some of the content is in breach of those rules. I therefore feel I have no alternative but to ask you to remove the content. As you rightly say you can post this on your website.

I will edit out the sections I mentioned and leave the ME part and the links, and hope that what remains is OK. I will have to just remove the lot of the Dutch section because it isn't practical to go through and attempt to edit it in detail. Of course if you are able to edit the original so as to maike your point without causing offence, then do so, however it still does seem to me to have no connection with the subject of this thread so it does seem that it belongs elsewhere.

Best wishes to you also,

Mark

 

[justinreilly]

What Do We Need More- a Biomarker or El Presidente for life?

Quote Originally Posted by Gerwyn on the Plea from Dr. Bell thread
...There is also published evidence showing a mitochondrial biomarker.It would take about 200 patients to make it generalisable.Mcleary's salary would easily cover the costs of the study...

What do we need more, Ms. McCleary's leadership or a mitochondrial biomarker? I'd love both, but with our insanely low funding, I guess we'll just have Ms. McCleary. I mean we patients have no choice, it's not like the CAA Board, most of whom are patients or patient's family, has any authority to not renew her contract. It says in her contract she is el presidente for life. oh, wait, I'm reading the fine print- or would be if CAA were transparent and would trust us with looking at it- and hmm.....

 

[starryeyes]

One thing's for sure, the CAA is not a Democracy.

 

[justinreilly]

You know what, Justin? This is an obnoxious post, and you know it. This thread was started to do something positive by raising money for research, at the suggestion of Dr. Bell (who I had the pleasure of meeting once). Taking potshots at another organization or employee of an organization is neither positive nor productive.

You're right, I should have posted it on the CAA thread. I'm moving it over there.

it's obnoxious, but justifiably imo. Taking potshots at what CAA is doing can be positive and productive if it motivates change or makes people consider an important issue. I consider urging you to allocate very scarce resources more efficiently to be positive and productive.

Plus when you're a big-baller stacking chips to the ceiling like Kim, you've got to expect some "hateration". Comes with the territory.

 

[jspotila]

You're right, I should have posted it on the CAA thread. I'm moving it over there.

it's obnoxious, but justifiably imo. Taking potshots at what CAA is doing can be positive and productive if it motivates change or makes people consider an important issue. I consider urging you to allocate very scarce resources more efficiently to be positive and productive.

Plus when you're a big-baller stacking chips to the ceiling like Kim, you've got to expect some "hateration". Comes with the territory.

Criticism of an organization's programs is fair game. Potshots are not. Are you suggesting that "hateration" is within the forum rules?

 

[Roy S]

This is from last December. I know the state leader she refers to and how very important that state is politically. So does Kim McCleary. Some people say lobbying the US government hasn't worked. It doesn't when it's not done correctly. Grassroots organization is essential, but it hasn't been done.

This is a post by Mary Schweitzer Ph.D. reposted in full with permission.

Cort - that's exactly the answer Kim gave me in 1996. It would be too hard; it would be too expensive for the National in Charlotte to start up a whole bunch of locals.

No! That's not what I suggested then and it's not what I'm suggesting now!
Sorry to get emotional, but there it is - the stone wall - the "you can't fix anything" response. "La la la la; I can't hear you."

I never suggested the CFIDS Association of America should "build local groups." I suggested that the CFIDS Association of America needs to work with existing state and regional organizations who themselves are already working with local groups.

The National doesn't generally do that much directly with locals. The National works with the State and Regional associations. The State and Regional organizations work with the locals. You're missing the most important step.

If the CAA responds by saying it would be too difficult to "build" state and regional groups, I'd be back beating my head on the floor again. They're already there.. We already have very good state and regional groups who are already work with local groups. You don't have to create them - in fact, you shouldn't create them. You need to work with them.

What's missing is the outreach - and what's missing is the willingness to let go of power.

Recently the traveling picture show of people with CFS came to a state that has a very well-run, large, longstanding organization. The president of the organization learned the show was in her state when she happened to go to a shopping mall and saw it there - with nobody to answer questions, with nobody to hand out pamphlets. Just a lot of pictures in a vacuum.

She was very frustrated - had she only been given a week's notice she could have had people there manning the show the whole time. She had pamphlets that could have been distributed.

I am presuming the CAA never notified her because (heaven forbid) Kim could not control the outcome if she allowed a state organization to take over some of the burden. And that's why the CAA isn't working.

To repeat:
National <-----> State/Regionals <-----> Locals
By the way - I didn't just pull this out of a hat. When I was a working professor, I had a colleague, a sociology professor at the University of Delaware, who had written a book about how successful NPOs work. I had just been to a national conference in New Orleans where she was the keynote speaker (I had responsibilities there left over from 1994, before my total collapse with the disease). This was 1996. Her speech was (unsurprisingly) about her latest book - she talked about the elements of a successful non-profit in the United States.

I flew from New Orleans to San Francisco, where the AACFS was meeting, with my notes from the talk in my Lands End briefcase, and asked Kim if I could spend a little time talking to her about organizational issues. She was very polite. She listened. And then she said it was impossible.

So here we had free advice - and could get more - from a nationally recognized expert in the organization of NPOs. And the response was ... just like yours. Kim didn't hear a word I was saying.

It's hard enough to live with an invisible disease without also being invisible to the people who speak for you as advocates. And the sad part is it's not necessary.

This is the point where I beg state organizations to come together - happy to come with you - and create a national organization that truly represents the population of patients with ME/CFS in the United States.

It was done before, you know - 1787. And they didn't even have a model to work with.
Mary Schweitzer

 

[justinreilly]

Criticism of an organization's programs is fair game. Potshots are not. Are you suggesting that "hateration" is within the forum rules?

Well, I wasn't using 'hateration' literally; I'm not criticising just to attack for no good reason because I'm jealous.

Do the rules apply to posts about people not on the forum? There are plenty of unfriendly comments about White and Wessely that noone suggests violate the rules.

 

[starryeyes]

Thank you for posting that Roy. Mary Schweitzer is completely correct. What does the CAA have to say for themselves?

 

[oerganix]

This is from last December. I know the state leader she refers to and how very important that state is politically. So does Kim McCleary. Some people say lobbying the US government hasn't worked. It doesn't when it's not done correctly. Grassroots organization is essential, but it hasn't been done.

"What's missing is the outreach - and what's missing is the willingness to let go of power." Mary Schweitzer

That about sums it up.

 

[The Phantom]

Does the CAA have a tin ear?

Today's Webinar & Preview of Campaign to End Chronic Pain in Women

Chronic Pain Conditions & the Overlapping Conditions Alliance
Date: May 5, 2010 - TODAY!
Time: 3:00 PM (Eastern Daylight Time)
Registration: https://www1.gotomeeting.com/register/222396689

Chronic pain - defined as pain persisting more than six months - is all
too common. It is estimated to affect 25 percent of Americans and
account for more than 20 percent of all physician office visits. Some
people suffer from two conditions, while others have three or more. In
some cases, individuals suffer from one condition for many years before
developing a second or third; in other cases, individuals experience
symptoms of several conditions simultaneously. These disorders make life
very difficult for millions of sufferers and their families.

In this webinar, organization leaders will describe four of the
conditions that have sidelined as many as 50 million lives and cost up
to $80 billion each year. The four conditions to be spotlighted are:
chronic fatigue syndrome (CFS), endometriosis, temporomandibular (TMJ)
disorders and vulvodynia. These four either solely affect women, or
target women at least four times more often than men.

CFS: Kim McCleary, President & CEO of the CFIDS Association of America

Endometriosis: Mary Lou Ballweg, President & Executive Director of the
Endometriosis Association

TMJ: Terrie Cowley, President of the TMJ Association

Vulvodynia: Christin Veasley, Associate Director of the National
Vulvodynia Association

These four organizations have formed the Overlapping Conditions Alliance
(OCA), a group of independent nonprofit organizations seeking to advance
the scientific, medical and policy needs of individuals affected by
medical conditions that frequently overlap. More information about the
OCA can be found at www.overlappingconditions.org.

During today's webinar, you'll also get a preview of a brand-new
campaign that will launch on May 19 at an event conducted with the
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Join us for this informative program to learn more about each of these
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and the suffering they cause.

Chronic Pain Conditions & the Overlapping Conditions Alliance Webinar
Date: May 5, 2010
Time: 3:00 PM (EDT)
Registration: https://www1.gotomeeting.com/register/222396689

Another thing that's missing is a basic understanding of the disease. ME/CFS is not a chronic pain condition. While many people with ME/CFS have pain our most disabling symptoms are post-exertional malaise, cognitive dysfunction and orthostatic intolerance. People with TMJ don't have these symptoms. People with vulvodynia or endometriosis (who are, indeed, exclusively women) don't have these symptoms.

This is soooooooooooo frustrating.:Retro mad: