CAA recommends, to me, questionable article on pacing. March 2010

[Lily]

(Btw, did anyone notice that I shaved?)

Of course I noticed that you shaved. No offense, but the baby gibbon was MUCH more fun to look at and seemed to capture your personality much better. But maybe I just need a few days to get accustomed to the new look.

 

[Roy S]

"I don't understand why you, or anyone else at the CAA, or I for that matter, should have to tell the CAA about major problems with their own literature and releases. Can't they make sure there aren't any before publishing them?? If they did, you and I and others wouldn't have to be waste a single drop of energy over their mistakes" -- Dr. Yes

yeah, what he said...

 

[jspotila]

Jennie, I don't understand your question. Based on your response, I think you must have totally misunderstood my comment. All I meant was that I don't understand why you, or anyone else at the CAA, or I for that matter, should have to tell the CAA about major problems with their own literature and releases. Can't they make sure there aren't any before publishing them?? If they did, you and I and others wouldn't have to be waste a single drop of energy over their mistakes, as we did over the other Spark materials and are now over this newsletter issue. I hope I have even further clarified my point, as it was never meant to upset or irritate you, but more as a commiseration, if anything, and also to express frustration at the CAA (NOT at you) for releasing yet another publication with a disturbing flaw... thus requiring others to help pick up the pieces, as you have started to do now.

I apologize, Dr. Yes, if I misunderstood your comment, or any other comments in this thread. I hear you saying that staff should have reviewed this article more carefully and edited to remove some or all of it. You also wonder why the Association is not publicly advocating for federal and state financial aid for patients who need care. This combines to support an overall impression that the Association does not care (or believe) about severely ill patients.

I do not know the particulars of how the Howard article ended up in the Link, so I am afraid I can't answer questions about that. But as Kurt noted in his post earlier, the Association is very short-staffed and overworked. We have to make very hard choices about how to allocate the human resources we have. Advocating for federal and state financial aid for patients is something we are not able to do right now. The Biobank, research program, meetings on the hill, publications, the webinar series, and raising funds to support all that work is just the starting point of the staff's workload (here is the summary of what the Association did last year).

I've noticed that forum members understand that Dr. Mitkovits and Mrs. Whittemore are extremely busy, and I think it's appropriate to be patient. I hope the same courtesy will be extended to the Association staff, as well. XMRV related work (research, public policy and communications) has been added to the intense workload and plans we already had in place in October 2009, but the XMRV work did not bring its own funding. Instead, the staff was stretched even thinner. This makes it impossible to take on some very worthy ideas/projects like the financial aid issue you raised.

 

[Stuart]

There are too many overlapping "incidences" to think that this is not consistent with the CAA's own views. If you wish to plead "we are to busy to check our facts in what we print," Don't Print It!

It is more consistent with accepting CDC funds to do 'work' of dubious value, or putting your name on CDC studies that you now profess not to agree with the assumptions and definitions used.

It seems consistent with the willingness to cast a wide net to maximize your constituency for funding and power (take note of those who use the broad phrase "chronic fatigue" without the word syndrome which catches idiopathic fatigue to sell their snake oil).

You can't do a mea culpa for at best being tone deaf and then repeat all the same "errors."

You can't push for exactingly done science and nit pick at implied but not revealed flaws, and then publish materials with no data to support any of its weak and self contradictory conclusions. But perhaps these snake oil salesmen make real money and have influence in certain circles?

Why else would it be included in a "serious" newsletter? This is no mere blog putting up whatever comes to the inbox; this is the supposed entity that is to advocate from the patient's perspective and to vet the work done in the field.

Not all studies are equal, not all therapies are equal, not all clinics are equal. The CAA needs to sort the wheat from the chaff, but instead often throws more than its share of chaff in the air. The very reason patients feel they are on their own and at times find themselves at odds with the group that is supposed to advocate for them.

The damage done is beyond repair.

 

[Cort]

The CAA continues to be responsible for suicides and PWC dying and/or becoming totally bedridden.

There are too many overlapping "incidences" to think that this is not consistent with the CAA's own views.

Lots of heat here. But is it accurate? Lets look at what the CFIDS is actually publishing (what an idea). Are they a CBT/GET promoting organization? Do these comments pan out? Let check out their publications.

Last ELINK

• The current paper - which did have bad point as well as good points.
• XMRV analysis
• A paper on gynecological problems - http://www.cfids.org/archives/2002rr/2002-rr3-article03.asp
• A paper on Reproductive Issues
  Webinar on their research program (which is also apparently causing patients to commit suicide)

Next ELink

The Hallmark of CFS - This CBT loving organization believes that the hallmark of CFS is Postexertional malaise. This article, which is by Suzanne Vernon, includes this paragraph:

Indeed, studies by the Pacific Fatigue Laboratory at the University of the Pacific have shown that the exercise physiology of CFS patients is quite different from and, in many ways, worse than people with cardiovascular disease. In a paper published in the Journal of Women’s Health, the Pacific Fatigue Laboratory and collaborators examine the perceptions of CFS patients following exercise. Dr. Mark VanNess and colleagues determined that the post-exertional malaise was both real and incapacitating for the women with CFS whom they studied and that it was not attributed to fear of exercise or deconditioning.

By the way repeat exercise findings probably wouldn't exist with the CAA's help; they funded them for years. It also mentions two studies they are funding that use exercise to bring out the physiological abnormalities in CFS.

the CFIDS Association of America currently funds two other studies that use an exercise challenge to identify objective markers for CFS diagnosis and treatment.

The NEXT ELINK

http://www.cfids.org/cfidslink/2010/010605.asp - the Research Program - mitochondrial abnormalities in the brain, muscle receptor problems, gastrointestinal problems, vascular abnormalities short circuting blood flows to the brain - that would make me want to commit suicide.

The next ELink

On Dr Vernon - that ex CDC researcher - this is going to be bad FOR SURE. http://www.cfids.org/cfidslink/2009/010703.asp

Whoops - cytokines, inflammation, neural networks, complement activation (immune system), HPA axis - no behavioral stuff here either.


ollmer-Conna U, Piraino BF, Cameron B, Davenport T, Hickie I, Wakefield D, Lloyd AR; Dubbo Infection Outcomes Study Group (Dunckley H, Geczy A, Harris R, Khanna R, Marmion B, Rawlinson B, Reeves WC, Vernon S). Cytokine polymorphisms have a synergistic effect on severity of the acute sickness response to infection. Clin Infect Dis. 2008 Dec 1;47(11):1418-25.

Bolshin C, Aspler AL, Vernon SD, Broderick G. Evidence of inflammatory immune signaling in chronic fatigue syndrome. Behav Brain Funct. 2008 Sep 26;4:44.

Fuite J, Vernon SD, Broderick G. Neuroendocrine and immune network re-modeling in chronic fatigue syndrome: An exploratory analysis. Genomics. 2008 Sep 30. [Epub ahead of print].

Presson A, Sobel E, Papp J, Whistler T, Rajeevan MS, Reeves WC, Vernon SD, Horvath S. A systems genetic analysis implicates FOXN1 in chronic fatigue syndrome. BMC Syst Biol. 2008 Nov 6;2(1):95. [Epub ahead of print]

Sorensen B, Jones JF, Vernon SD, Rajeevan M. Transcriptional control of complement activation in an exercise model of chronic fatigue syndrome. Mol Med. 2008 Nov 16. [Epub ahead of print]

Hickie I, Davenport T, Vernon SD, Nisenbaum R, Reeves WC, Hadzi-Pavlovic D, Lloyd A; International Chronic Fatigue Syndrome Study Group. Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings? Aust N Z J Psychiatry. 2009 Jan;43(1):25-35.

Sure you can disagree with some things the CAA puts out but stating that they believe CBT is it or that they are not committed to a physiological explanation of CFS is unfair. Prove otherwise. I don't mean by taking isolated statements out of a papers published over their history, I mean show me some real evidence.

 

[Cort]

I want to point out as well that if there is central nervous system damage, as many of us think there is, then one way to impact that is by attempting to 'rewire' the brain so that parts of the brain that are undamaged take over for the parts that aren't damaged. It is my understanding that in stroke victims that is done by using mindfulness/behavioral whatever you want to call them - techniques. THat does not mean this is a psychological disorder.

 

[hvs]

Holy smokes, publishing this was a brain dead idea.

 

[starryeyes]

Stuart Wrote: There are too many overlapping "incidences" to think that this is not consistent with the CAA's own views. If you wish to plead "we are to busy to check our facts in what we print," Don't Print It!

I agree. It would be much better if the CAA just didn't print this kind of damaging information.

I feel that the CAA are not doing enough to help us and they're spending most of their time, energy and money putting out information that harms us.

Cort, we've been over all this many times and you haven't changed your mind about the CAA and neither have those of us who are upset with them. If you wish to see the evidence against the CAA, read our old posts and if we want to know where you stand we can read yours.

 

[Hope123]

I want to point out as well that if there is central nervous system damage, as many of us think there is, then one way to impact that is by attempting to 'rewire' the brain so that parts of the brain that are undamaged take over for the parts that aren't damaged. It is my understanding that in stroke victims that is done by using mindfulness/behavioral whatever you want to call them - techniques. THat does not mean this is a psychological disorder.

I've worked with stroke victims. Physical therapy is used to prevent further decline and to help people adapt to their new disabilities; while therapy is helpful, what dose, which kinds, how long, and its impact are still far from optimal. It's far from an exact science and hard to predict how much function people will regain. Physical therapy and counselling help but it has not stopped or deterred stroke researchers from continuing to look at various medical treatments to augment function.

 

[Gerwyn]

I want to point out as well that if there is central nervous system damage, as many of us think there is, then one way to impact that is by attempting to 'rewire' the brain so that parts of the brain that are undamaged take over for the parts that aren't damaged. It is my understanding that in stroke victims that is done by using mindfulness/behavioral whatever you want to call them - techniques. THat does not mean this is a psychological disorder.

I agree It actually happened to me.for 3 years I had bo cognitive function at all and the brain is epigenetic in nature.I could get even more boring on this subject!.

This organisation however is mixing second hand science with mythology..If they dont respond to treatment then they did not want to get well and so on

.In the uk anyone can legally call themselves a therapist or psychologist whether they have any formal qualifications or not.They cant however call themselves chartered or registered.

This guy calls himself a psychologist or a practitioner.

If you note the graph the y axis is expanded and the x compressed.using this method tiny almost imperceptable changes can look mountainous notice also lack of controls and diagnostic criterea.

I appreciate that the organisation(now I know what the CCA stands for) has and does produce good science.

on this occasion a sales pitch has crept through

.Given that this organisation will now claim endorcement of its methods by the CAA this is very unfortunate and potentially highly damaging for the biological approach.

The CCA has many fine minds available to critique such material the most prudent course of action would be to delay publication until the material has been evaluated and cleared

.It would take an experienced eye less than ten minutes to evaluate this kind of work



















On this occasion however a sales pitch has crept through

 

[leelaplay]

I see so much passion, intelligence and concern here. I thought Id add a few more thoughts. My apologies as I havent been able to read everyones posts.

I guess my strongest feeling is that while I continue to think that the CAA made a huge error recommending and posting a link to this site, therefore, in effect, endorsing and aligning themselves with the beliefs of the author, I still appreciate the other good things the CAA is doing.

If youll forgive the clich, I dont want to throw out the baby with the bathwater. I want the CAA to deal with this error and get the article off their site. And I want to continue to support the positive actions the CAA is taking funding biomedical research, webinars, trying to make themselves current in terms of communication, including participating on this site to name a few.

They are not wealthy gods who can do anything they choose. They are a group, many of whom are ME/CFS patients themselves, funded by donations. My guess is underfunded, understaffed and overworked. And they are not perfect. Like me, they make mistakes. This is one of them. But mistakes must be dealt with. I hope they deal with it in a way to minimize the impact of the error to readers and to themselves.

I didnt see any posts arguing against pacing itself its a very useful technique for maximizing what energy we have. But is it a cure - not at all. Should the CAA be recommending a site that has a graph showing that everyone recovers? NO. That by itself should have been enough to kaibosh the idea of using this article, let alone the other strong points made in this thread.

I liked the idea of the CAA using a lens of examining all materials to be published through the eyes of the very ill who have no information on the illness and are relying on the CAA for accurate, safe info. Most of us here could read the article and extract the good bits out of it. And there are some good bits. But a newly ill person would read this article and walk away (oh I mean, continue lying in bed) thinking that ME/CFS is a psychosomatic disorder, and if they have the right attitude, and pace and increase their activities, they will get well, just like everyone else does. And if they dont get well it is their fault.

An additional lens to use before deciding to publish something is to ask what an uninformed doctor would take away. What tests and treatments would they offer their patients, and what expectations would they have of them?

This article would fail both lens tests in seconds.


Does anyone have any good materials on pacing to offer the CAA?

I close with this quote from ME/CFS : A Clinical Case Definition and Guidelines for Medical Practitioners, An Overview of the Canadian Consensus Document, pg 10

The biological pathophysiology of ME/CFS is a reality that must be respected and reflected in all treatment and rehabilitative programs. Total illness burden, impairments, low endurance, overload phenomena, and fluctuation of symptom severity and activity boundaries must be respected. Focus on reducing symptomatology and maintaining function. It is essential that the patient does not exceed his/her limitations or activity boundaries too often or too deeply because this can cause a severe, long-term relapse.

 

[starryeyes]

Thanks for posting that answer from the Canadian Definition for CFS Islandfinn. That's what I wish the CAA would adopt and use. In fact, they need to promote the entire Canadian Definition for CFS. They could break it up and use pieces of it for various subject areas.

 

[leelaplay]

Thanks for posting that answer from the Canadian Definition for CFS Islandfinn. That's what I wish the CAA would adopt and use.

My pleasure - we aim to serve.

I'd love it if they adopted it too!



ps Dr Yes - you've lost that cuddly playful look.

 

[starryeyes]

Oh I like the new look Dr. Yes. It's nice to watch you evolving.

 

[cfs since 1998]

In fact, they need to promote the entire Canadian Definition for CFS.

That's an excellent point. Instead of advocating for us the CAA is totally complacent. Instead of encouraging the use of the Canadian Consensus critera we have Dr. Vernon calling Oxford "accepted and widely used." What kind of advocacy is that? Accepted my foot. No one has used Oxford in years, not even its proponents, and it's certainly not well characterized. She becomes an Oxford apologist, claiming Fukuda didn't exist at the time. How about using the definition that designated the name CFS in the first place? She can't praise enough the characterization of the cohorts in the three failed validation studies yet she spends an entire paragraph slamming WPI's characterization of the Science cohort. Now the CAA reprints on their website this psychobabble sales pitch from the UK telling us we could all get better (see the fake graphs!), but maybe we don't know what we want to do with our lives or whatever -- and that was the icing on the proverbial cake.

hvs nailed it, the CAA is braindead. The CAA doesn't "fund" research--they collect the money and then redistribute it. It's a bureaucracy. Sometimes the CAA supports some "good research", I'll give you that, but a broken clock is right twice a day. If you just throw money in random directions it's bound to land on both good and bad research. I have yet to see signs of intelligent life at the CAA. Selecting projects to donate to by drawing out of a hat would be just as effective and without the deadweight loss of the six-figure salaries.

 

[Jenny]

If you note the graph the y axis is expanded and the x compressed.using this method tiny almost imperceptable changes can look mountainous notice also lack of controls and diagnostic criterea.

I appreciate that the organisation(now I know what the CCA stands for) has and does produce good science.

on this occasion a sales pitch has crept through

.Given that this organisation will now claim endorcement of its methods by the CAA this is very unfortunate and potentially highly damaging for the biological approach.

The CCA has many fine minds available to critique such material the most prudent course of action would be to delay publication until the material has been evaluated and cleared

.It would take an experienced eye less than ten minutes to evaluate this kind of work

I agree that it's very unfortunate that the CAA has published this, given their status and influence in the US.

However, we're in danger of conflating discussion of their actions with a discussion of the strengths and weaknesses of Howard's paper. The graph does not purport to be based on any scientific evidence. There's not even a label for the y axis. And it's fairly clear to me at least that everything said in this paper is based only on his clinical experience. What's wrong with that? We see it all the time - for example Mikovitz, Cheney, Klimas etc produce reams of stuff about how certain medications and supplements help their patients and we don't dismiss their recommendations because there are no controlled studies.

I've seen this sort of graph used a lot to help people understand that progress is slow and not linear. Everyone I know who has improved or recovered, including myself, experiences improvement in this way. It might even be a diagnostic feature of ME.

From what I've heard and seen of Howard I think he genuinely wants to help people. He's not a chartered psychologist, but chartering isn't up to much in many areas of psychology. And he shouldn't call himself a psychologist - he doesn't have a post-graduate degree. He talks a lot of nonsense, particularly in going on about certain personality types and their link to the dvelopment of the illness. These personality types have no basis in psychological research and there's no evidence that personality is linked to ME.

There's a lot wrong with Howard's paper, and the CAA shouldn't have used it in this way, but he does have some interesting things to say.

Jenny

 

[Mithriel]

Any organisation which claims to advocate for CFS patients or ME patients must ALWAYS be working for their welfare. Some of the posts here seem to say that as long as some or even most of their work will help us it doesn't matter how much damage the rest will do.

But it doesn't work like that. Even a small amount of damaging content in the CAA literature will be seized upon as endorsement by those who want to see us all classified as somatisers who only believe we are ill and would be better if we weren't such lazy wimps.

And what about the patients who read this newsletter? How will they feel about reading they could be well if they only changed their beliefs and did the work?

Dr Yes talks eloquently about the things that could be done for the severely affected. You don't have to lobby Washington, just write articles for the newsletter which say that wheelchairs should be provided, benefits received, that people with ME/CFS should be treated with compassion, then the reader will feel someone UNDERSTANDS.

I accept that the organisation is run by very sick people who are trying hard but the present situation is like someone being considered a good husband because he only beats his wife up once a year. One bad thing negates dozens of good things.

Mithriel

 

[Hysterical Woman]

Oh My Dr. Yes!

(Btw, did anyone notice that I shaved?)

OH my - have you turned into Khan???

Hysterical

 

[jspotila]

I wanted to double-check before posting this to ensure that it is completely 100% accurate: the Association has no financial relationship with, nor derives any benefit from, Mr. Howard or his clinic. The Association has published a great deal of material by a number of practitioners, including the January webinar by Dr. Cindy Bateman, without having a financial relationship with any of them.

 

[jackie]

Mithriel!...took the words right out of my mouth...thanks! (ONE "BAD" is enough to taint. With "our" history it makes no difference how much "good" you wrap it up in!)

If a publication refers to subjects that the Patient Base has LOUDLY protested against, again and again....don't advocate it! Simple.

Are we not being loud enough?

(BTW...I re-read the linked article two more times...imo, this really does need to be retracted, with an explanation - that's the only way this wrong can be made right...but I fear it won't be. Let Howard say "interesting things" where my current doctors - or worse yet...my NEXT Doctor! - won't read them! That's all I ask.)