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

[kurt]

Light study and exercise/pacing in ME/CFS

The research that the CAA funds in Utah (the Lights) is very good; now take that info and apply it.
That is, you have your own proof showing the deleterious effects of exercise in CFS sufferers so shouldn't info on the site about exercise or activity (like this Howard fiasco) incorporate some warnings?

Hope, this is a great point I think. The essence of the Light study should be included in future descriptions of exercise or pacing models for ME/CFS and I hope that becomes part of a new medical standard for describing ME/CFS. So why not start now and begin re-writing materials, particularly for educating doctors? The Light study needs publication then replication and validation studies also so it can become part of a new medical consensus about ME/CFS.

 

[cfs since 1998]

WOW, that is quite a leap cfs_since. I quoted a simple definition of libel because some comments made about CAA were false and potentially damaging, and that makes more work for moderators because we have to remove that if someone asks. Who said anything about someone suing patients? I did not. Please do not add inferences like that to my words.

When you are worried about people "libeling" someone (which I haven't seen) the implication is that you are worried about getting sued. Why else would you "have" to remove it?

 

[kurt]

When you are worried about people "libeling" someone (which I haven't seen) the implication is that you are worried about getting sued. Why else would you "have" to remove it?

No, that is not always the implication, I expect most people do not sue when defamed. But it still has to be addressed on a public forum like this. You implied that CAA might sue its patients which was stretching what I was saying. Just so you know, CAA has never made a threat like that to my knowledge. But others in the CFS world have both threatened and also filed law suits when they felt defamed online so this is an issue I believe moderators have no choice but to always take seriously. So when I see threads headed that direction, I will post reminders.

 

[starryeyes]

ok. now I go to bed.

thank you, all.

IMO...as difficult as this whole process was (for both sides!)...removing it was the RIGHT thing to do.

(I consider it one more step to true understanding. Doing the right thing - one step at a time...works!)

j

Sounds good to me too! Thank you Jennie and thank you to everyone who protested this article!

 

[Cort]

A much more peaceful thread

The essence of the Light study should be included in future descriptions of exercise or pacing models for ME/CFS and I hope that becomes part of a new medical standard for describing ME/CFS.

I agree but I would put the Pacific Fatigue Lab work in front that showed that repeat exercise tests indicated that at least some CFS patients demonstrate an inexplicable meltdown on the second exercise test.

http://aboutmecfs.org/News/PRJan09Pacific.aspx

That first study is the main reason, I believe that Dr. Light and many other researchers are incorporating the exercise and stress tests into their testing protocols. I think it's redefining how researchers study this disease and because of that we'll get more and more positive studies over time. (I asked Staci Stevens if the CDC had ever asked her about their work and she laughed).

http://aboutmecfs.org/Conf/IACFS09Exercise.aspx

Not to beat a dead horse but for those who think the CAA isn't doing good work the CAA funded BOTH those studies.

 

[anne]

(I asked Staci Stevens if the CDC had ever asked her about their work and she laughed).

I'm guessing that's not a HA HA HA I just got off the phone with them yesterday laugh?

 

[Tammie]

jspotila....thank you for listening to us and sharing this thread with the CAA.....very glad that they have removed that article

 

[Mithriel]

I am glad thta the CAA listened, it is the best thing that has happened over the last few days.

Not to beat a dead horse but for those who think the CAA isn't doing good work the CAA funded BOTH those studies.

Cort, no one said the CAA did not do good work. Unfortunately, all that good work is negated by an endorsement, actively or passively, of these things that say CFS is a false illness belief. The outside world is swamped by this message and it makes it less likely that the medical profession will take any heed of the good studies that are funded.

Mithriel

 

[Jenny]

@CBS:
This is SO great. I enlarged it and printed it out and posted it on the wall next my desk. Thanks so much for posting this. Do you have a link to the original?

I'd like to know the evidence that crashes may have a cumulative effect and compromise a complete recovery. They say it's just a hypothesis. And what is the evidence that the CNS cells may never recover?

One of the things I find extremely stressful about this illness is the possibility that doing certain things will be permanently damaging. Some of us have to do things, especially when we have family to look after. And I've got to try to go to my mum's memorial service in 10 days time, but could that set me back months, years or for ever?

Perhaps we could discuss this in a new thread. It's clear that we crash when we overdo it, but just how dangerous is over-exertion?

Jenny

 

[Mithriel]

I think it might take a lot of over activity to make it permanent. The problem with CBT and GET is that it sets up the conditions where permanent damage is most likely.

I have been ill since I was fourteen with all the life conditions, good and bad, that happen. I was slowly getting worse, but I had three children and I might have started to improve when they were all school age.

My youngest started nursery school and I had to climb a steep hill. I got fitter and began to be able to walk much more easily and much further. I thought my health had improved. Unfortunately, being fitter, while good in itself, had changed my warning signs of when I had done too much. I think I was in the situation that people can get if CBT is working for them.

This went on for some weeks or maybe a few months then one Wednesday afternoon in March 1990 I was walking home from the library with my son when my legs got weak. I had to pull myself along holding onto the railings.

I have not managed to walk more than a few steps since. My overall health is not good, but I am not confined to bed, I think I could be pottering about a bit but my legs won't work. Something about this illness accumulated and caused permanent damage to my nervous system while I was feeling better and fitter. I imagine it like walking in a broken leg. You might manage but the damage will become permanent.

Mithriel

 

[Jenny]

That's terrible Mithriel - I didn't know you were so badly affected. I'm so sorry.

A warning to the rest of us.

Jenny

 

[Gerwyn]

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

His graph is clearly shown to support his argument change the scales around and there is no change .it is a well known marketing trick.He is not a psychologist yet claims to be.His clinical experience is filtered through the veil of his preconceptions which are hardly unbiased there are no selection criterea for diagnosis.Do his cured patients have the ilness the list is endless .I think some of it could be percieved as interesting but this unscientific unprove psychobabble we can do without.Mixing tfact and fiction can be a very effective sales technique

 

[Jenny]

Not sure what you mean by 'change the scales around and there is no change', Gerwyn. As I said we don't know what the numbers mean on the y axis so the graph doesn't make sense anyway.

But as I said this is not hard science and I don't think he's claiming that it is. He's using this graph to show that recovery goes in fits and starts. This is based on his experience and of course it's based on his prejudices, just as a doctor's experience is.

We don't know about whether any of his patients have ME but this problem dogs empirical research as well, as we well know.

There is nothing new in this part of his paper but it's extremely helpful for people to know that those who improve or recover do so in this way. Most doctors say this too. I still find comfort in reminding myself of his after 25 years.

Jenny

 

[biophile]

I agree with Mithriel. Symptom exacerbations are usually temporary (eg minutes to weeks) but chronically pushing the boundaries can lead to long-term changes.

The CAA article on pacing appears to be a mixture of good advice and psychobabble.

 

[Gerwyn]

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



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!



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.

I think what Dr Vernon should have said is that the patients were selected contrary to internationally agreed ciriterea at the time and not to imply that Oxford was all that was available.Perhaps Dr vernon not being a medic genuinely does not know that She may also not realise that the dutch study cohort were drawn from a group of patients whose symptoms were entirely phycological .That was according to the recruiting trialists themselves.The patient specs are easily available. Perhaps someone should inform her of these facts.She should be aware of the near certainty of RNA degradion and T and B cell death over that period as I understand that she is a virologist.Perhaps as she is so busy she has probably not delved into the methodology in any depth at all.

 

[Gerwyn]

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


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.


YES!


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.

A basket case misdiagnosed by basketcases!?

 

[Gerwyn]

Not sure what you mean by 'change the scales around and there is no change', Gerwyn. As I said we don't know what the numbers mean on the y axis so the graph doesn't make sense anyway.

But as I said this is not hard science and I don't think he's claiming that it is. He's using this graph to show that recovery goes in fits and starts. This is based on his experience and of course it's based on his prejudices, just as a doctor's experience is.

We don't know about whether any of his patients have ME but this problem dogs empirical research as well, as we well know.

There is nothing new in this part of his paper but it's extremely helpful for people to know that those who improve or recover do so in this way. Most doctors say this too. I still find comfort in reminding myself of his after 25 years.

Jenny

The easiest way to exaggerate change in any presentation is to expand A y axis and compress a x axis.

You cant have a graph that means anything without a y axis as you cant plot it in the first place.

He is arguing that his treatment methods work.To support that you must have hard science.He sells this as aproven method which works if you want it.

A doctor has access to objective measurements blood counts etc and of course the consensus of other doctors with experience in the field.

He is basing his experience on his own subjective predetermined viewpoint only.

Drs are trained in diagnostic skills this guy clearly isnt.

It is like apples and pears.He cant diagnose ME some doctors at least can according to objective criterea

 

[Jenny]

The easiest way to exaggerate change in any presentation is to expand A y axis and compress a x axis.

You cant have a graph that means anything without a y axis as you cant plot it in the first place.

He is arguing that his treatment methods work.To support that you must have hard science.He sells this as aproven method which works if you want it.

A doctor has access to objective measurements blood counts etc and of course the consensus of other doctors with experience in the field.

He is basing his experience on his own subjective predetermined viewpoint only.

Drs are trained in diagnostic skills this guy clearly isnt.

It is like apples and pears.He cant diagnose ME some doctors at least can according to objective criterea

I can't believe I'm defending this man! But how do we know he is expanding the y axis when it has no units. The graph is no more than a subjective picture of how people improve when they do improve. Lots of docs also argue that their treatments work, with no hard evidence and take lots of our money.

Very few docs do the right blood tests, as we know, and there is not a lot of consensus. I suspect he's better at diagnosing ME than most docs I've seen, given that he sees so many sufferers.

 

[Gerwyn]

I can't believe I'm defending this man! But how do we know he is expanding the y axis when it has no units. The graph is no more than a subjective picture of how people improve when they do improve. Lots of docs also argue that their treatments work, with no hard evidence and take lots of our money.

Very few docs do the right blood tests, as we know, and there is not a lot of consensus. I suspect he's better at diagnosing ME than most docs I've seen, given that he sees so many sufferers.

You cant plot a graph without a y axis what did he use? he did not paint this graph as something he dreamt up he was putting it forward as evidence.he is not qualified in any way to diagnose ME.He is essentially saying that his method is acure.it is all on his website

 

[Gerwyn]

I can't believe I'm defending this man! But how do we know he is expanding the y axis when it has no units. The graph is no more than a subjective picture of how people improve when they do improve. Lots of docs also argue that their treatments work, with no hard evidence and take lots of our money.

Very few docs do the right blood tests, as we know, and there is not a lot of consensus. I suspect he's better at diagnosing ME than most docs I've seen, given that he sees so many sufferers.

The fact that he is copying other peoples approaches and claiming that treatments work without any supporting scientific evidence is not an excuse or a defence