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

[jackie]

Yes...YES, DR.Yes! I noticed you, too! You silly old Klingon!

("....we need Warp Speed in THREE MINUTES!...or we're all dead!")



Klingons take NO Prisoners...



j

 

[Andrew]

I've been avoiding this thread but now I've read the article. I find myself wincing in spots as a read, but also wondering if I'm being over-critical.

It emphasizes the importance of pacing. It says that this has to be individually tailored. It says that people should not push themselves and cause crashes. It talks about the mitochondria that that this is an organic problem. It says that some patients actually need to be told to hold off or slow down. It also says there are stress-related factors.

It looks like the person who wrote this is not discounting the physical nature of the illness. But, perhaps, not acknowledging how difficult the illness can be. It is not one big happy lumpy graph going up for many of us. But then again, if this were someone pushing antiretrovirals, I don't think we would be upset with an upbeat message. So we are back to the politics. And politics are real. So it would be nice if they acknowledged that this method has worked with some, but that CFS is so confounding it can't be guaranteed.

So, would I mind it if my doctor saw this article? No. Am I thrilled with it? No. Am I mad that CAA put it up? No. But I'd like to take a hatchet to that graph.

 

[Cort]

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?

This is not true! This is what Dr. Vernon said about the Oxford definition:

Use of the less-restrictive Oxford criteria may be objectionable by current standards, but samples were collected before publication of either the Fukuda research criteria (1994) or the Canadian clinical definition (2003).

How do you turn that into an endorsement of the Oxford definition? How do you become an 'Oxford apologist' by stating that?

I don't see any encouragement there. The CAA has never used the Oxford definition or promoted it. That's pretty tough when all you have to is mention the definition to get portrayed as an apologist!

Instead of advocating for us the CAA is totally complacent.

Jennie just said that Kim McCleary and Suzanne Vernon were up on Capitol YESTERDAY advocating for patients!

My apologies Gerwyn - I mischaracterized your response. I'll change my post.

 

[CBS]

So who benefitted?

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.

Jennie,

Thank you for checking.

I do appreciate the work that the CAA has done in creating a uniquely coordinated and collaborative research program. That does not happen by chance (nor does it happen twice a day).

That said, I do hope that everyone at the CAA appreciates the serious damage done by the Howard article. These incidents damage credibility with the patient community, send confusing messages to those newly diagnosed (at best), alienate the more experienced, leading ignorant/ cynical 'care' providers to denigrate those who don't improve when provided marginal therapies and even amongst the most well-meaning, articles like this promote controversial practices which when applied carelessly (or ignorantly) are increasingly recognized as dangerous.

I have said this before - in order to be an effective advocacy group, the CAA (and others) needs to consider every word and know that somewhere those words are being read by newly diagnosed patients, patients that have dealt with this for decades, doctors who understand CFS as a neuro- immune disorder and doctors that think they know CFS and will cull through a piece like this 'remembering' only that they were correct in classifying a current patient as having emotional disorders or dismissing a past patient as having been resistant and responsible for their lack of recovery.

1) Clarity - as in no convoluted qualifications of what the CAA means when they recommend CBT and GET (when the Canadian Consensus Dx criteria has already stated in clear and simple terms sound recommendations without all of the confusion).
2) Putting the important stuff at the top of every article on treatment, such as:

"Many CFS patients are seriously ill and suffer from significant immunologic and neurological dysfunction. In some, even the least strenuous activity can lead to potentially dangerous exacerbation of symptoms. including the possibility of irreparable CNS damage."​

If standards such as these cannot be met because of staffing or funding issues, I personally feel that it would be far better to take a moment, regroup and say nothing (except , please - be patient). I cannot imagine that the Howard article, for what ever reason it was published, has helped the CAA (both in terms of staff time and potential donations).

Again, thank you for confirming my earlier question. Sadly, it looks like the only one to gain anything from this is Mr. Howard himself as I am sure that traffic on his web-site rose dramatically (and at the very least, so did his advertising revenue).

I will paste a copy of your response to the post in which I posed my original question.

 

[_Kim_]

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.

This is not true! This is what Dr. Vernon said about the Oxford definition:

Use of the less-restrictive Oxford criteria may be objectionable by current standards, but samples were collected before publication of either the Fukuda research criteria (1994) or the Canadian clinical definition (2003).

How do you turn that into an endorsement of the Oxford definition? How do you become an 'Oxford apologist' by stating that?

I don't see any encouragement there. The CAA has never used the Oxford definition or promoted it. That's pretty tough when all you have to is mention the definition to get portrayed as an apologist!

IT IS TRUE!!!

cfs_since_1998 is correct. Further on down in Playing A Weak Hand Well, Vernon writes:

The PLoS ONE paper by Erlwein, et al, the Retrovirology paper by Groom, et al, and now the van Kuppeveld, et al, paper in BMJ all studied well-characterized patient cohorts that met accepted and widely used CFS case definition criteria.

 

[sarahg]

what Shane said. That was very well put.

And here is a thought to take back for you, Jennie.

Many non-profit advocacy organizations get a lot of their grunt work done by volunteers. While probably not too many people are near enough to be there in person, a lot can be accomplished over the computer. Things like double checking mailing lists, compiling addresses, sythesizing data, vetting articles for publication, etc. Now logically you've gotta do a background check and a little training program, and that does cost money, but in the long run when you are short staffed and underfunded -implementing a volunteer program could really stretch those dollars. It could also be a great way to garner more direct patient and member participation and increase trust and goodwill- which will increase donations and membership in the long run.

I read somewhere that the membership numbers of the CAA are nothing like what they used to be. I am sure if that is true (I have no independent verification of this) your board is trying to do things to right the ship and get back on course and I don't think that will ever fully happen without a way for people to feel like they are involved and they have a say in how they are represented. A volunteer program would be a great way to do this. Even if it is as simple (no background check no training needed, minimal time commitment on both ends) as having a volunteer focus group put together that would get articles and press releases in advance (by as little as a few days even) and give you feedback. That could help avoid messes like this and previous ones.

 

[Cort]

I see what you're saying. ' Accepted' was probably a mistake. I don't know what the research community thought of them at the time - that was a long time ago - but I think word was a mistake. She did note, however, earlier that she was referring to the definition at the time at which point she said that the Oxford definition 'may be objectionable by current standards' and she called them 'less restrictive'.

That certainly doesn't make her an apologist for the Oxford standards. She's not endorsing them! The CAA has never used or endorsed them. They're not calling for the world to start using the Oxford definition. THat's the sense you get from that post.

I can see your point and I hope she's more careful in the future but I think that post went way too far.

 

[Cort]

Healing State: I'm looking at the first video on the site on the 'healing state' in CFS. It resonates very much with I've been doing for the past two years. I realize that it may not with everyone but if you've ever characterized yourself as 'wired and tired', if you've had an inability to relax your body even when you're resting, if you feel like your muscles are tight and tense, if you feel like your mind is racing and its difficult to stop it etc. I suggest you look at it. It makes alot of sense to me:

http://www.freedomfromme.co.uk/blog/

I looked at their course books: I see Yoga, Learn to Relax and Sleep. Hey, that won't be the key for every body, I realize that; some have problematic infections, people have seizures, etc. but if you fit into the 'wired but tired' subset as I do..I think you should take a look at it. System arousal is my big problem. As i said I don't know how it got started but anything I can do to turn it down helps.

This kind of stuff has improved my quality of life greatly and I expect it to keep improving it.

“Why ME”, Alex Howard’s book (12)
“Beat Fatigue with Yoga”, Fiona Agombar's book (10)
“Beat Fatigue with Yoga” the DVD (10)
“Learn to Relax” 4 CD audio programme (30)
“The Sleep Inducer” 4 CD audio programme (30)

I realize that it appears to be very simplistic to some people but then again CFS is a very varied state; there are lots of subsets and this is one of them. Is the CAA supposed to ignore it?

These treatment protocols: This guy says he's helped lots of people. Ashok Gupta and the LP guy would say the same. I don't think they're lying. I think alot of people have derived help from these treatments. I think the biggest problem is that the degree of help can be overstated - leading people to believe this is it for everyone. I get the concern about that. That's a problem - I'm certainly not nearly well I'm not going to say this is it.

There aren't that many success or even improvement stories. Alot a people spend alot of time and alot of money getting nowhere. If something shows up - and now three similar programs have - that seem to produce improvement - they should be considered along with the Vistide and Valtrex and cortisol and stem cells and all the others. I realize the UK patients who do not get help from these treatments are in a bind; it must be torturous for them to see stuff like this spring up.

Its not an easy situation. Basically what we need to have happen is that CFS needs to have better diagnostic procedures so that we can put people in their proper subsets.

 

[oerganix]

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

So true! Printing Dr Peterson does not give CAA the 'right' to print Howard or White. If they had Hitler and Mother Theresa, would we then be obligated not to complain about Hitler?

"CAA, working to make CFS widely understood, diagnosable, curable and preventable" is on their logo.

Articles lending credence to such as Howard do not add to understanding, diagnosis, cure or prevention. In fact, they are counterproductive. This kind of stuff is exactly what I do NOT want my Congressman, my doctor, my family and friends, let alone my fellow sufferers, to read in a national publication that is supposedly our "advocate".

It is a distraction from finding the real cause and cure. It is a wolf in lamb's clothing, purporting to give us answers to questions we have already had answered from other sources, with better motives.

Cort, no one here thinks that there is no benefit to stress reduction. It is a given, for the healthy as well as the sick. I meditate and find it to be truly a lifesaver. But we don't go to a publication such as the CAA's for hints on meditation. We are not so dumb or helpless that we haven't already found those things that help us, or else we can find them on such wonderful sites as Phoenix Rising (thank you, thank you).

The point is, CAA is giving mixed messages with garbage like the Howard link and the really poor statement Dr Vernon gave on the Dutch study, which was done by Wessely clones. Since they claim to represent us, we have every right to expect better. No one is really listening to us as individuals, so what CAA says is the only thing many ears will hear on this subject. To find disinformation and misinformation straight from the propaganda of the Wessely school shoved in our faces one more time, by what we hoped was a trusted friend, is devastating. The Howard claims are totally inappropriate to the whole field of CFS knowledge, as has been pointed out in detail. There are 1000s of studies pointing to the organic causes of CFS, so it wouldn't take much to write something about one of them, even if they want to avoid talking about XMRV and viruses.

That they have some research projects in the works is great. But a valid point was made that they don't FUND, they collect, decide and disburse. So for those who have limited funds for donating, how CAA spends the money they collect is a very valid concern. WPI also has several other directions in research going on right now, too, so the same defense could be used on their behalf and their attitude toward CFS is unambiguous.

 

[garcia]

Alot a people spend alot of time and alot of money getting nowhere.

Which is why we need research/treatment focussed on the root cause rather than symptom suppression.

If something shows up - and now three similar programs have - that seem to produce improvement - they should be considered along with the Vistide and Valtrex and cortisol and stem cells and all the others.

Considered by patients, yes, but not medicalized. I don't want to go to my doctor and be fobbed off with some symptom-suppressing treatment. I want to be given medical treatment by my doctor.

I realize the UK patients who do not get help from these treatments are in a bind; it must be torturous for them to see stuff like this spring up.

YES!

Its not an easy situation. Basically what we need to have happen is that CFS needs to have better diagnostic procedures so that we can put people in their proper subsets.

That would be a start, but the government isn't going to do this since right now they can put us all in the psych/malingerer/lightly affected category since that is the cheapest to treat. The severely affected are in the "invisible & waiting to die" category right now.

The only way we are going to get proper subsets is by finding the root cause ourselves (e.g. retrovirus) and creating a whole new disease subset (e.g. XAND) to escape the basket-case that is CFS.

 

[CBS]

<snip>

System arousal is my big problem. As i said I don't know how it got started but anything I can do to turn it down helps.

This kind of stuff has improved my quality of life greatly and I expect it to keep improving it.

<snip>

I realize that it appears to be very simplistic to some people but then again CFS is a very varied state; there are lots of subsets and this is one of them. Is the CAA supposed to ignore it?

<snip>

Cort,

As for system arousal, I do hope that the Howard article hasn't driven any of us too far into a crash all on its own.

Thank you for your willingness to consider comments and to both acknowledge when mistakes were made and to stand your ground when you feel that others have been unfairly criticized.

CFS is a varied state and for me, how I viewed the potential danger of simplistic explanations changed dramatically when I started experiencing life threatening autonomic dysfunction two years ago. For some of us, this is not just a matter of being unwell, feeling lousy or having a reduced capacity (but that is how I would have described it for a majority of the time I have been ill). This really is life or death and I suspect that for those who are not yet at that juncture, the cumulative impact of minor 'mistakes' may hasten the day when you see this from a much more unsettling vantage point.

You make this site work by example and I learn a lot from just watching how you respond to difficult situations.

Thank you.

 

[Cort]

So true! Printing Dr Peterson does not give CAA the 'right' to print Howard or White. If they had Hitler and Mother Theresa, would we then be obligated not to complain about Hitler?

"CAA, working to make CFS widely understood, diagnosable, curable and preventable" is on their logo.

Articles lending credence to such as Howard do not add to understanding, diagnosis, cure or prevention. In fact, they are counterproductive. This kind of stuff is exactly what I do NOT want my Congressman, my doctor, my family and friends, let alone my fellow sufferers, to read in a national publication that is supposedly our "advocate".

It is a distraction from finding the real cause and cure. It is a wolf in lamb's clothing, purporting to give us answers to questions we have already had answered from other sources, with better motives.

Cort, no one here thinks that there is no benefit to stress reduction. It is a given, for the healthy as well as the sick. I meditate and find it to be truly a lifesaver. But we don't go to a publication such as the CAA's for hints on meditation.

If behavioral therapies do improve the quality of life of some patients then the CAA is obligated to discuss them and studies do indicate that behavioral can do that for some patients. If that's all they did then that would be a real problem but they discuss all types of patients and the CAA is on record stating that they do not support more CBT research and they took the CDC to task for moving that direction; they think more than enough studies have been done on that subject.

I realize this is a very problematic area at this stage of our understanding of CFS but I do not think its realistic to expect the CAA to ignore therapies like this. I meditated before I had CFS. After I had it my body was so tense and uptight and mind so crazy I didn't even think to try. When I finally did try those types of things - several DECADES later - they have very slowly been very helpful. I wish I'd tried earlier.

I know its a very tough situation. I just did a blog on someone whose done spectactularly on Vistide! I also have one coming up on someone who did spectactularly on Lightning Process! I had one for whom stopping grains and using herbal medications and immune supplements were critical. There was Mikes story with neural therapy and homeopathy and acupuncture. Some of Dr. Lerners patients on Valtrex have done very well. Its a wild world.

Maybe the CFIDS Association should do a piece on Dr. Lerner or Vistide - balance it out .

 

[Lily]

Oerganix said:

Articles lending credence to such as Howard do not add to understanding, diagnosis, cure or prevention. In fact, they are counterproductive. This kind of stuff is exactly what I do NOT want my Congressman, my doctor, my family and friends, let alone my fellow sufferers, to read in a national publication that is supposedly our "advocate".

I feel quite strongly about the above.


It really looks like the CAA just doesn't get it, which is truly troublesome. In fact it just doesn't ring true to me that they can not understand this, so I must resolve that they do get it, and they have made this conscious choice again and again. Which leads me to "WHY??", and that takes me to places I don't really want to go.

I was not going to comment (beyond my very brief one early in the thread) on this since so many collectively, have thoroughly stated every point I could possibly want make. However I do NOT want it to be assumed that by my silence I am OK with this. And I do think that is what silence would represent.

Thank you, Island Finn for bringing this to our attention and to everyone who has so eloquently stated what should be the obvious to our advocacy organization.

Lily

 

[jspotila]

The following has been posted at the top of the Art of Pacing on the Association's website:

We receive many questions each week from people with CFS who have difficulty managing the energy and activity limitations imposed by CFS, largely due to the characteristic symptom of post-exertional malaise/fatigue/relapse. This article was brought to our attention by CFS patients posting in an open online forum as being a comprehensive overview of the topic of pacing. The views expressed in this article are the author's views alone, and no endorsement of this or any other approach to illness management is implied or conveyed by the CFIDS Association. There has been no therapy shown to be effective for every person with CFS, so readers are encouraged to consider their own health status and tolerance for medical and supportive therapies before making changes that could have positive, negative or mixed results. Finally, there is no relationship, commercial or otherwise, between the Optimum Health Clinic and the CFIDS Association.

 

[Cort]

CFS is a varied state and for me, how I viewed the potential danger of simplistic explanations changed dramatically when I started experiencing life threatening autonomic dysfunction two years ago.

I think this is the big problem; while I would think these therapies are probably helpful for anyone with a chronic illness they are not the answer for people who have serious and even life threatening problems - they do not speak to core aspects of their illness.

They speak to people like me - who are relatively well, so to speak, but can't exercise, have lots of difficult body sensations, feel jittery and anxious - who basically feel like their core-well being has been stripped away leaving them functioning on the fringes of life...but who are not having seizures, experiencing bizarre autonomic dysfunctions, who are not bedridden, do not have strange or problematic infections, or strange heart problems, etc. - ie core heavy duty medical complications.

There are lots of people with really severe problems. I developed the websitel because of how severely this disorder, even with my relatively mild case of it, changed my life; it was a line of demarcation for me - virtually everything changed - that was more than enough for me to devote my time to this... but the Forums have really opened my eyes to just how sick people get with this. . I see again and again people going to doctors with bizarre test findings and the doctors just shaking their heads - they just don't have a clue.

I can understand the angst of people like this when they see something like this; they don't feel represented and my sense is, without actually looking, that the CAA is pretty conservative on the treatment end. I don't know if they're worried about people trying treatments that can have bad side effects or not. I think some people feel that a side of CFS is not being represented as well as it should be.

That doesn't mean that the CAA is not advocating for them, however. Kim McCleary's mother in law has been disabled from CFS for over a decade and her mother in laws daughter has it.They are advocating for everyone, even if an article speaks to just one part of the community.

 

[hvs]

I've been avoiding this thread but now I've read the article. I find myself wincing in spots as a read, but also wondering if I'm being over-critical.

You know, all we want is the CAA to be smart, smart, smart politically.
Really, this isn't rocket science.

 

[Cort]

It would probably help if the CAA is not already doing this they should put a disclaimer on every treatment review stating that CFS is a very heterogenous condition and different people will benefit from different things. That's what I'm doing on the Recovery/Recovering Section that is being built up.

 

[jackie]

Howards site says this: "When you are underactive (which I am) ...there is a high risk of falling into "SICKNESS BEHAVIOUR" patterns.

I wanted to know the definition of SB... I googled "sickness behaviour patterns"...I came up with several sites (mostly referring to this condition in animals (calves/chickens)...so I chose a link to a book "Psychiatry and the Human Condition" by Bruce Charlton...was then "directed" (by google high-lighting) to Chapter 8 "The Malaise Theory of Depression". Then to pg 74:" MAJOR DEPRESSIVE DISORDER is SICKNESS BEHAVIOUR"...then this was highlighted "...the SYNDROME of MDD is virtually identical with a syndrome seen in animals.The animal equivalent of MDD is the adaptive state, termed Sickness Behaviour. Major Depressive Disorder is Sickness Behaviour that is inappropriately activated or excessivly sustained" (I'm so sorry that I can't remeber how to give links! this is the best I can do!)

I assume this was a textbook (chapter 7, I noticed was about ECT - Electric Convulsion Therapy Action)...and I didn't read any more than what my google search had directed me to..obviously the entire chapter should be read so as not to take anything out of context. But I wanted to know what Howards site was referring to re: Sickness Behaviour, and I get the gist of it now. And this was just ONE "idea" I took exception to!

I believe that if I printed this (the Howard article) out for my Doctors (and my family and friends) they would be delighted with this information...ALL the information! It's what most of the people I know would LIKE to believe is the answer to all my "problems"! And, I might add, what many have been telling me since I became "mysteriously" ill...as it would be such an easy and convenient (as they would see it) SOLUTION!

Personally..I've never been able to accurately convey what PEM (for example ) DOES to those of us who experience it! And although the article describes "pacing" - it certainly downplays PEM...calling this a "BLIP"!? (And never mentioning any potential irreversible damage that can happen....and yet we know it can!)

So...my conclusion is that athough "self-educated" PWC's could read this article and probably be able to understand/ pick and choose "the bits" that applied to them - those they feel comfortable/safe implementing....the "outside world" will not.

(BTW...I find the statement that because "I'm" underactive, I risk SB patterns, very offensive. This is simply NOT the case, for me anyway!)

j (I stand by my objection)

 

[PoetInSF]

Personally it makes me angry when I read stuff about pacing, relaxing, meditating, CBT and GET because it has the presumption that I created this disease and it was up to me to get out of it.

Nobody is accusing you of creating the disease, but you MAY have some control. Just maybe. Why not keep that possibility open? The only other option is to do nothing waiting for a viral solution that may never come. I sure wouldn't want CAA to advocate that.

I understand that CAA is not putting their eggs in the same basket, however, one egg might be golden. And one of 2 eggs might go bad.

Maybe. But which egg? Do you really want to bet your life on the viral one without knowing which is truly golden?

 

[PoetInSF]

Maybe the CFIDS Association should do a piece on Dr. Lerner or Vistide - balance it out .

For people who reported postive experience, there are people like Mary Schweitzer who had servere side effects with no improvements. I wouldn't want CAA to engage in chronicling annecdotes just for the sake of blancing out. They should leave that job to sites like this. Instead, if there is enough credibility in Vistide for CFS, they, or somebody else, ought to sponsor a clinical trial. (I'm sure Vistide mfg would be interested in funding if they think they'll make money off CFSers).