Making sense of fatigue - Julia Newton editorial in Occupational Medicine

I missed this when I read the article. It is a bad sign. Anyway I haven't lost faith with them because of other research they have published (if they were judged just on this paper then, yes, I wouldn't have much faith in them).

 

I agree that Julia Newton has done good work on Autonomic aspects of ME/CFS, especially Orthostatic intolerance and your point about the value of researchers developing an area (rather than hopping from one inconclusive finding to another) is spot on. She's also stressed how with some illnesses, such as PBC, fatigue is primarily physiological in origin - which is why I'm so suprised she seems willing to group all types of fatigue together in a spectrum. But hey, she's entitled to her views on that, they don't alter her own research findings and she did make some very good points about doctors tending to see all fatigue through psychological lenses.

 

Their reply is stunningly good in my view.

They have responded swiftly and politely and from a position of experience of dealing with a number of physical disorders where fatigue is predominant - not just ME (ie they already know more than enough about fatigue thank you very much).

They have addressed the major issue of what is currently out of balance and skewed in favour of a psychological approach to ME treatment in the UK. In fact they have neatly used some of Prof W's arguments in return, ie they present a 2 sided approach and ask him to participate in order to redress the balance in favour of an increased biomedical approach.

They have suggested autonomic and cardiovascular assessments for ME patients in the UK NHS clinics.

If he really thinks there is no dividing line between mental and physical - how could he refuse?

This is a superb letter.

 

He is, above all else, a master propagandist, a political salesman. That is where his real skill lies, and he is very, very good at it, as we know all too well.

I note also how many of the references he cited in support of his arguments were papers by him.

Also, he regurgitates his usual schtick about how he has conducted research into biological aspects (cortisol, immune markers, etc), but really this is just stuff to try to back the psych view. If he was serious about the biological stuff he would be doing proper exercise and cardiac studies, EEG, and a whole lot of other stuff.


And well said, Esther.

 

Isn't this kind of an amazing statement by Wesselly. Isn't he saying there that his model really doesn't fit and that more research is needed?

 

Regarding Julia Newton's research and her "spectrum of fatigue", you might be interested to see this...

http://www.ncl.ac.uk/icm/research/publication/71614

Right, so exertional intolerance is all due to NMH -- we obviously knew that anyway. Furthermore, NMH is all or mainly due to faulty conditioning, ie deconditioning, deconditioned standing. Finally, increased daily orthostasis for 6 months -- of course it was obvious this was feasible.

Well, that's that sorted then.

What do you mean, you're not happy?

Here's the full text...

://onlinelibrary.wiley.com/doi/10.1111/j.1365-2362.2009.02225.x/full

I don't know anyone with genuine ME/CFIDS who could stand for 40 minutes (even if leaning against a wall) every day without rapid deterioration. And it goes without saying it's impossible and probably dangerous for pwME with cardiac dysfunction. So once again, severely affected sufferers, even moderately affected sufferers this time, are shafted.

Measurements included impedence cardiography but don't know if this was exactly the same technique of measurement as Cheney uses.

This just seems like more of the, "for the people who could do it it was okay". So what?

So, no suggestion that the therapy may be completely inappropriate for them, may have been making them worse?!


The 40% of misdiagnosed cases she's excluded is the tip of the iceberg... The curse of the fatigue misnomer strikes again.

If this is where Newton's "good" research is going then I for one, don't need her and don't want her and at the very best she offers me nothing. Didn't it even bother her that "patients with muscular/neuro disoders" (ie ME/CFIDS!) precluding standing were the ones most in need of help and yet the very ones she was blithely excluding? Never more has this "stuff" being researched seemed like two separate diseases.

Incidentally this also cements my suspicions around NMH being that it's no more than a fancy term for deconditioning, or at least there's nothing about it that precludes that interpretation.

 

"The beatings will continue until morale improves."

 

I get suspicious/don't like it when doctors starting concentrating too much on non-pharmacological treatments. It can end up with blaming the patient.

Fortunately Julia Newton also uses drugs e.g.

 

I agree with IamME's criticism. The study's methods and conclusions are circular.

Newton's group: "They were asked to maintain this position without movement for up to 40 min or until they experienced symptoms." I didn't know that even mildly affected CFS patients (supposedly with NMH in this study) who can tolerate some standing if they really have to could actually stand up for any length of time without any symptom worsening at all, not to mention 40 minutes.

Hehe!

 

Thanks for the full text, IamME.

I've started a thread on it at:
http://forums.aboutmecfs.org/showth...ndomized-placebo-controlled-feasibility-study

I know writing posts takes energy so think people can feel free to use the same posts there to start of the discussion.

I just read the paper and am not happy with it.

 

Good god! So do I.

 

Beautifully put.

 

It seems that he is saying that yes there are biological factors in CFS/ME. But that they are to random from person to person to be useful in conformation of CFS/ME and as being caused by something like a virus, bacteria, fungus, etc. And as such the psychosocial mind body theory being the easiest answer is the logical choice as to causation until such a strictly physical cause is found.

Which is status quo since with the current thinking among the medical community towards CFS/ME as a mental disorder further research towards a cause validating it being a physical disorder would be pointless? End result things stay right where they are.

 

And all based on false premises in the first place.

 

Of Course, that's the Wesselly way after all. He's a Master Orator, Debater, Obfuscator and Spin Doctor basing facts on false premises are but one of his specialities.

 

Indeed. What should we call circular reasoning when it chases an imaginary tail? :Retro smile:

 

I would disagree with his last statement; what about cortisol?, NK cell activity, oxidative stress, low blood volume, RNase L abnormalities....I'm sure that I've missed some.....

 

This just shows what a mess the field is on both ends...he said no consistent biological abnormalities but as he points out here (indirectly) there are no consistent psychological abnormalities either....

some studies show high(er?) rates of psych disorders (not sure about that but) CFS also occurs without psychological distress and that whatever emotional problems that do occur can occur as a result of CFS; as a result of having a physiological condition (otherwise why put it that way??).

This reminds of the CDC's personality study...yes rates of personality disorders were increased in CFS but most people with CFS did not have them..... (yet the title of the article was 'increased rates in CFS - which was true altho the more salient fact might be - 70% of people with CFS or whatever it was - do not have them....)

 

I agree with you regarding the personality study.

Unfortunately there are worse figures out there than the personality study:

 

But we can still criticise those CDC studies by the fact that those people weren't actually diagnosed with CFS by their physician.