Dr. Enlander tackles a poor paper "Fear of movement and avoidance behaviour..."

[snowathlete]

Here is his letter to the Editor, published in this month's journal.

Here is the paper he is talking aboutL Nijs J et al (2013) Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia: state of the art and implications for clinical practice. Clin Rheum.

I'm always really pleased to see our doctors tackling these issues. I think it's important.

 

[Sasha]

Here is his letter to the Editor, published in this month's journal.

Here is the paper he is talking aboutL Nijs J et al (2013) Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia: state of the art and implications for clinical practice. Clin Rheum.

I'm always really pleased to see our doctors tackling these issues. I think it's important.

I'd like to see more of our researchers (and clinicians) doing this.

I've seen people argue that they should be left to get on with their research but actually, to write a letter like this when you're on top of the literature doesn't take long and could do a lot to protect patients and set other medics straight. Bad papers shouldn't be left unchallenged, and medical journals are much more likely to accept a letter from a doctor or researcher than a patient.

 

[Xandoff]

"The notion that ME/CFS is caused by poor conditioning is no longer widely accepted. It is thought that it is an immune system dysfunction, which after onset can be provoked by stress, over exercise or overwork [3]. Indeed, there can be depression, but this depression is secondary to the disease much like any other chronic disease. Cognitive behavioral therapy may be helpful to reverse the secondary depression but one must understand that this depression is indeed secondary and the initial disease entity is in the immune system and must be identified and treated."
Derek Enlander

Thank you snowathalete for posting this. This is so important. This is not what our local GP's want to hear or read! It felt so good to read what I know to be true. Thank you Dr. Enlander!

 

[WillowJ]

medical journals are much more likely to accept a letter from a doctor or researcher than a patient.

journals do accept letters from patients. One should write a very polite letter, follow the journal guidelines, and say something specific (and concise) about the paper in question, and cite other (better) literature in support of your points (there will usually be a limit on how many papers you may cite). Depending on the journal one is writing, it might help to use academic language.

Here are a number of letters published on the PACE trial, several of which were from patients:
http://forums.phoenixrising.me/inde...hed-and-authors-response-and-editorial.10306/

of course the journal was not very happy in this particular case, but the letters are there and any reasonable person can decide who is making the best case.

I haven't had a letter published, by the way. This is what I've picked up from others. But it seems worthwhile to me.

 

[WillowJ]

thanks very much for posting, Joel. That's encouraging.

Thanks to Dr. Enlander for his work on this!

 

[Valentijn]

Bad papers shouldn't be left unchallenged, and medical journals are much more likely to accept a letter from a doctor or researcher than a patient.

I've got a letter which should be getting published pretty soon. And while I do have a doctorate, it's a legal one, not medical

I think the main thing is to put on your "scientist" hat and write a very objective and well-supported letter about the science, not about your feelings as a patient, or anything about the authors. It does take more work, and editing, and a lot of research, and the whole process of submitting things can be pretty overwhelming the first time. But we've got the time, and the capability - at least, when our brains are functioning somewhat

 

[Sasha]

I completely agree that patients should write to these journals and that's very good advice about how to do it. Go for it! Mostly, we're all we've got so we shouldn't wait for clinicians or researchers to do it.

But editors and readers will partly assess a writer's argument on their status and if you're a private individual up against Professor X at the University of Brainyshire, you really want Professor Y of the University of Geniuschester writing in. I really would like our researchers and clinicians to write in more.

 

[Sasha]

I've got a letter which should be getting published pretty soon. And while I do have a doctorate, it's a legal one, not medical

Well done! We need more of both, in fact - patients writing good letters like yours and our clinicians and researchers piling on too.

 

[snowathlete]

A few of us have talked before about coordinating this kind of activity and inviting doctors to get involved too. How about we setup a group of us who want to coordinate and write these letters? Once we have our stuff together we can contact doctors and collaborative a to try and get them involved too. Over time we could get a number of doctors putting their names to these, which I think would give us a stronger voice.

 

[allyb]

IMHO

You can engineer most research to FIND/CONCLUDE most things as long you as you stick stringently to the rules of academia. (Compiled by the academical hierarchical institution, revered by them, sustained by them and controlled by them) You could pretty much conclude the moon was blue.

Confirmation bias (a type of cognitive bias, ironically) is highlighted and mitigated for…… or is it??? (If you always do what you’ve always done? you’ll always get what you’ve always got; springs to mind here)

I do get upset when they crank up the same tired old drum, and bang out a variation of the same old sorry tune. All those who recognise the tune then sing or hum along. And once again it’s in the popular music charts, subliminally churned out to the masses. Except for those of us who are chronically sick and sufferer with noise sensitivity; this dull repetitive drone is pure offensive noise pollution and serves to make us sicker, it hurts. (Bad science hurts us)

What I fear is that this kind of claptrap glides through because it follows rigours rules. Accepted by journals, it gets peer reviewed as some kind of ‘rite of passage.’ Yet we hear Dr Montoya and other imminent doctors and researchers in the ME/CFS field highlight how difficult it is to get their work into a journal. And getting funding for any such ME/CFS research is even more elusive.

Cognitive behavioural therapy (CBT) “as prescribed-is what it says on the tin, it is prescriptive!! It is just another person’s perspective/view (some random-er’s with no lived-in experience of our illness) on what they think is best for our individual illness. Its aim is to change our beliefs (to theirs!!) Cognitive Behavioural Therapy does NOT foster autonomy. Well….it does if only you’ll change your false illness beliefs and stop avoiding the gardening, going to the gym and that holiday of a lifetime you’re just shirking.

I (with a psychology and research background) am not in the least bit frightened of “Movement” on the contrary I yearn-crave to be up-and-about. Of course I test the boundaries like most of my M.E. companions on this forum and we learn from and share our mistakes. Experimental good lived-in research!!!!! This is what Cognitive Behaviourist call, “Weighing up the pros and cons,” we consider the advantages and disadvantages and we learn from each other. We share techniques, support and encourage each other and feed-back. Most importantly this is NOT STATIC, we are constantly updating and trying new ideas. The best and truest form of ‘cognitive fluency’ (here on PR)

*We have at our disposal (On PR) access to more current (and historical) research than most scientific researchers would include in any study. *We are privy to far larger, more holistic, universally rounded approaches i.e. Rx Medicines, supplements, protocols, psychological, physiological, diet, complimentary, massage, osteopathy, chiropractic, cranial, spiritual, (the list is endless)

*We do not set out to prove or disprove hypotheses for professional gain. Our aim is to get well!! Thus we have our lives and indeed our quality of lives invested in it.

*Because we are not confined to a strict set of rules and encompass so many individuals with differing opinions, abilities and backgrounds we have the flexibility to highlight bias’s. Therefore, on the strength of our own conclusion we can make autonomous decisions and judgements that fit with our symptoms and limitation (within our chronic illnesses) to the very best of our ability. And we can update and change accordingly, whilst………..

………….the rest of the medical world and the Doctors and real scientists who are truly working for us, are allowed to catch up with real science and bio-medical stuff, which one day will help us in a way we truly deserve.

allyb

 

[alex3619]

"Dr Donald Staines stands in for Professor Sonya Marshall-Gradisnik. Publications expected in next weeks and months; still finding “sustained, demonstrable, significant impairment in NK cell function”, "highly confident" of up-regulation of T-reg cells; "clear derangement in the immune system...it's irrefutable", and “anyone who suggests that this might be fixed by exercise therapy should probably be de-registered I think”." [My underlining]

Mark wrote an excellent piece here: http://forums.phoenixrising.me/inde...in-me-international-me-conference-2013.23541/

 

[MeSci]

"Dr Donald Staines stands in for Professor Sonya Marshall-Gradisnik. Publications expected in next weeks and months; still finding “sustained, demonstrable, significant impairment in NK cell function”, "highly confident" of up-regulation of T-reg cells; "clear derangement in the immune system...it's irrefutable", and “anyone who suggests that this might be fixed by exercise therapy should probably be de-registered I think”." [My underlining]

Mark wrote an excellent piece here: http://forums.phoenixrising.me/inde...in-me-international-me-conference-2013.23541/

I am guessing that 'de-registered' is what is known in the UK as 'struck off', and I agree wholeheartedly. Any undeserved knighthoods should also be removed forthwith.

 

[alex3619]

I am guessing that 'de-registered' is what is known in the UK as 'struck off', and I agree wholeheartedly. Any undeserved knighthoods should also be removed forthwith.

I predict this will be a very popular sentiment.

 

[Nancy Blake]

Does anyone know whether there was any report of the Invest in ME conference in the general media e.t. BBC, Times, Independent, i, Guardian, anywhere? If so, I'd appreciate the reference. Hoping to do a Ph.D. project on the ways in which the psychiatric view of ME comes to predominate in medical and political circles, the media, and public opinion. Failure to report a conference in which biomedical research is presented is a very conspicuous element of this.

 

[Bob]

Does anyone know whether there was any report of the Invest in ME conference in the general media e.t. BBC, Times, Independent, i, Guardian, anywhere? If so, I'd appreciate the reference. Hoping to do a Ph.D. project on the ways in which the psychiatric view of ME comes to predominate in medical and political circles, the media, and public opinion. Failure to report a conference in which biomedical research is presented is a very conspicuous element of this.

I haven't seen anything in the national media, Nancy.
The only reports I've seen so far have been on patient oriented websites.

Perhaps you might find this publication (from the SMC) helpful for your PhD?:
http://forums.phoenixrising.me/inde...cle-in-sunday-times.23050/page-10#post-360792

 

[Sasha]

I predict this will be a very popular sentiment.

I think it's going to end up on a lot of t-shirts.

 

[Sasha]

Does anyone know whether there was any report of the Invest in ME conference in the general media e.t. BBC, Times, Independent, i, Guardian, anywhere? If so, I'd appreciate the reference. Hoping to do a Ph.D. project on the ways in which the psychiatric view of ME comes to predominate in medical and political circles, the media, and public opinion. Failure to report a conference in which biomedical research is presented is a very conspicuous element of this.

The MEA Association usually link to media coverage in their daily news section (right hand sidebar of their homepage) so that's a good place to look.

Interesting PhD!

 

[alex3619]

Does anyone know whether there was any report of the Invest in ME conference in the general media e.t. BBC, Times, Independent, i, Guardian, anywhere? If so, I'd appreciate the reference. Hoping to do a Ph.D. project on the ways in which the psychiatric view of ME comes to predominate in medical and political circles, the media, and public opinion. Failure to report a conference in which biomedical research is presented is a very conspicuous element of this.

Hi Nancy, I am writing a book on this very thing as well as other issues. If you have not read it I suggest you read Angela Kennedy's book Agents of their own misfortune? and Overton's Charcot's Bad Idea. Good luck with your PhD if you go ahead with this.

My book is in year two of an estimated ten year project. Originally I wanted to call it Embracing the Null Hypothesis, but now I am looking at calling it Embracing Uncertainty. Medicine does not seem to be able to function without answers, and will often embrace a wrong answer before no answer.

Best wishes, Alex.

 

[COACH]

Here is his letter to the Editor, published in this month's journal.

Here is the paper he is talking aboutL Nijs J et al (2013) Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia: state of the art and implications for clinical practice. Clin Rheum.

I'm always really pleased to see our doctors tackling these issues. I think it's important.

Thanks for sharing this. It has a really good quote that I might can use for something I am writing. I have been looking through studies to see if I could find much against ONLY using cbt/get. I am still searching for one more specific to cognitive behavior therapy though. A quote is a start.

 

[Firestormm]

A few of us have talked before about coordinating this kind of activity and inviting doctors to get involved too. How about we setup a group of us who want to coordinate and write these letters? Once we have our stuff together we can contact doctors and collaborative a to try and get them involved too. Over time we could get a number of doctors putting their names to these, which I think would give us a stronger voice.

Why can't Phoenix Rising author, sign and submit these letters in it's own right? Not saying that doctor's shouldn't be asked to support the letter - but PR is an entity. I suggest we use it or at least consider using it to this purpose.

Sure not everyone will agree with everything written, all of the time. A letter will never be 100% to everyone's satisfaction; but if you were to consider Enlander's letter for a moment - it is not 'technical' it is succinct, to the point; and it's style could be replicated fairly easily.

Too much detail and/or too many words and you won't get past many of the word-count restrictions. And, hell, we're patients not scientists (most of us ) - a collective patient-letter (especially one that embraces an international community); could be well received.

Worth a thought or three I should think