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

Light study and exercise/pacing in ME/CFS

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.

 

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.

 

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

 

A much more peaceful thread

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.

 

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

 

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

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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.

 

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.

 

A basket case misdiagnosed by basketcases!?

 

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.

 

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

 

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