Which articles do doctors need to see?

[Cheesus]

Hello all,

My family has not been able to take part in any MillionsMissing events, so we instead decided to do a little of our own advocacy. Via family friends who work in the NHS, we have managed to get in touch with the people who commission services for our local NHS region. My dad spoke to them initially via email and subsequently via telephone, and they have asked us to send them a few articles that they can share with local doctors to highlight what is going on in the world of ME.

I don't want to send too many as that may overload them, so the ideal is to collect maybe 4 or 5 max. So far I have:
- The PACE reanalysis
- Naviaux metabolomics study
- An editorial from the Annals of Internal Medicine that details Lipkin's immune signature findings, Montoya's brain study and the neuro-inflamation study

What else do you guys think I should put in?

 

[A.B.]

IOM report, NIH intramural study. It's useful to have some big names in there so people realise this illness is leaving the fringes of medicine.

 

[A.B.]

If I were to do the list I would probably do IOM report, NIH intramural study, Naviaux metabolomics, PACE, and maybe Rituximab stuff, although that is a bit dated.

 

[Cheesus]

If I were to do the list I would probably do IOM report, NIH intramural study, Naviaux metabolomics, PACE, and maybe Rituximab stuff, although that is a bit dated.

I think that is a good list, though it is a toss-up for me of whether to include the Rituximab stuff or the Annals of Internal Medicine editorial, as that gives a good overview of the evidence up to that point in 2015. Here is the editorial:

http://annals.org/article.aspx?articleid=2322808

 

[Cheesus]

I'm also a bit concerned that the IOM report is simply too long, and no one will bother looking at it. I found a guide for clinicians that seem a bit more congenial to people who may not have much to do with ME:

IOM's Report Guide for Clinicians - The National Academies Press (opens a PDF)

What do you think?

 

[A.B.]

You're right, the Annals article is not too long, unlike the IOM report.

 

[Cheesus]

I am going with:

• Annals of Internal Medicine editorial
• IOM Guide for Clinicians
• Naviaux study
• PACE reanalysis
• NIH article discussing intramural study

Thanks for the help

 

[John Mac]

What about the AHRQ downgrading CBT & GET?

This Addendum downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and this has tremendous implications for medical education and treatment recommendations."

http://forums.phoenixrising.me/inde...ew-changes-its-conclusions.46229/#post-764260

 

[Cheesus]

What about the AHRQ downgrading CBT & GET?

This Addendum downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and this has tremendous implications for medical education and treatment recommendations."

http://forums.phoenixrising.me/inde...ew-changes-its-conclusions.46229/#post-764260

That is a good suggestion. I don't want to send them more than 5, so I am not sure what I would take out. The PACE reanalysis?

 

[trishrhymes]

What a brilliant idea Cheesus, good luck with it. Do let us know if there's any feedback to you and if you see any change in local medical attitudes.

If I could think of a way in, I'd do the same for my local area. Don't think I know any influential people. I gave a copy of the MEA purple book to my GP and told her a bit about it. She said she'd have a look and put it in their GP practice library. No follow up yet.

Maybe I should gather the same set of documents you are gathering and send them to the GP practice with a covering letter.

 

[Never Give Up]

http://iacfsme.org/ME-CFS-Primer-Education.aspx

 

[Cheesus]

On second thought, I am going to leave it as it is. The AHRQ downgrading is certainly worthy of a spot, but so are millions of other things and I would spend forever trying to narrow it down to a few choice articles. The ones I have included so far get the message across.

Thanks, @trishrhymes. I will certainly let you know if I hear anything back.

 

[Cheesus]

That is a great resource @Never Give Up. Plenty of stuff to dig into and definitely worthy of sharing.

 

[Mary]

@Cheesus - I know you have your final list, but if I were doing it, I would include this: https://www.ncbi.nlm.nih.gov/pubmed/24755065
which proves the horrible reality of PEM, which many believe to be the hallmark of ME/CFS.

Your list is good, I'm going to see a new doctor this week and I will use some of the items from your list!

 

[Cheesus]

@Cheesus - I know you have your final list, but if I were doing it, I would include this: https://www.ncbi.nlm.nih.gov/pubmed/24755065
which proves the horrible reality of PEM, which many believe to be the hallmark of ME/CFS.

Your list is good, I'm going to see a new doctor this week and I will use some of the items from your list!

Another great one! People should keep them coming as this could be an invaluable resource for people who want to undertake similar advocacy projects.

 

[Glycon]

I'm also a bit concerned that the IOM report is simply too long, and no one will bother looking at it. I found a guide for clinicians that seem a bit more congenial to people who may not have much to do with ME:

IOM's Report Guide for Clinicians - The National Academies Press (opens a PDF)

What do you think?

I would also include IACFSME's Primer for Clinical Practicioners. In my opinion, it is superior to IOM's Guide in some ways.

In general, I'm inclined to think that at this stage (at least until the results of some of the recent studies are corroborated) it is better to emphasize the studies and reviews that undermine the psychological interpretation by revealing its weaknesses and limitations...

 

[CFS_for_19_years]

The PACE Trial Invalidates the Use of
Cognitive Behavioral and Graded Exercise
Therapy in Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome: A Review
Journal of Neurology and Neurobiology

Mark Vink
Family Physician, Soerabaja Research Center, Amsterdam, The Netherlands
Published date:
30 Mar 2016
https://www.sciforschenonline.org/journals/neurology/article-data/JNNB-2-124/JNNB-2-124.pdf

What sets this paper apart is that it was published in a peer-reviewed journal. It was done even before any re-analysis took place. This is one paper I would hand to any doctor I came across who promoted GET and/or CBT. The re-analysis that was posted on Virology hasn't been peer-reviewed.

 

[TrixieStix]

I'm also a bit concerned that the IOM report is simply too long, and no one will bother looking at it. I found a guide for clinicians that seem a bit more congenial to people who may not have much to do with ME:

IOM's Report Guide for Clinicians - The National Academies Press (opens a PDF)

What do you think?

the IOM report has a 22 page "Clinician's guide" that is a condensed short abbreviated version. I gave this to my own doctor recently. It isn't overwhelming. It's easy to read, has a few pages of charts and states the most important things from the report.

 

[Jill]

I am going with:

• Annals of Internal Medicine editorial
• IOM Guide for Clinicians
• Naviaux study
• PACE reanalysis
• NIH article discussing intramural study

Thanks for the help

Think they are great . I got somewhere with my local hospital with the iom report - not sure which I linked to . I've basically used the others now also . The thing that got the attention was the iom report. But the annals article you supply does everything which I'm v glad to have . Thank you !

 

[Cheesus]

@TrishaMafia Is that different to the guide I linked to in the post you quoted? I am getting a bit confused now.

@CFS_for_19_years That is a good idea. I will see if my dad has sent the stuff off already and if not I will swap out the PACE reanalysis for that article.

@Glycon That is another good suggestion. Certainly that guide does have more information.