Papers you can take to your doctor.

Dr.Patient

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Can people post links to the most useful papers on mecfs that patients can take to their doctors? Like how "CBT/GET" are harmful, etc. Or papers that prove the physical, organic illness,etc. Or anything major being done in research, etc.

The goal here is as long as doctors are accessing inaccurate, outdated, information as in Uptodate, for e.g., they will not be able to help us.

Papers or News from prestigious universities, or high-quality journals are much better than obscure ones.
 
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I'm afraid that this offer can only apply to the UK due to the high cost of doing so:

We can send a copy of the MEA purple booklet to any GP surgery in the UK - free of charge

This booklet summarises and references (over 300 research and clinical trial papers are listed) all the key research evidence in relation to:

Nomenclature

Epidemiology

Research findings

Clinical assessment: History - Examination findings - Investigations - Differential Diagnosis

Management:

Symptomatic relief for pain, sleep, orthostatic intolerance etc

Drugs aimed at the underlying disease process - Rituximab etc

Other aspects of management - disability aids, education, employment, energy management and pacing, pregnancy etc

Children and adolescents

Severe ME/CFS

Prognosis and quality of life

MEA purple booklet:

http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/
 

CFS_for_19_years

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Since my doctor decided to get on the "GET" bandwagon I sent him links to a bunch of articles of how exercise affects us. Here ya go:

1. Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up.
http://www.ncbi.nlm.nih.gov/pubmed/21234629
"At 12 months, the intervention did not improve HRQL scores, with worse SF-36 physical function and bodily pain scores in the intervention group. Multidisciplinary treatment was not superior to usual treatment at 12 months in terms of HRQL."

2. A review on cognitive behavorial therapy (CBT)
and graded exercise therapy (GET) in myalgic
encephalomyelitis (ME) / chronic fatigue syndrome
(CFS): CBT/GET is not only ineffective and not
evidence-based, but also potentially harmful for
many patients with ME/CFS

https://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf

3. Immunological Changes After Both Exercise
and Activity in Chronic Fatigue Syndrome: A Pilot Study

https://niceguidelines.files.wordpress.com/2015/01/white-jcfs-2004.pdf

Digested and summarized by Dr. Speedy ("About Dr. Speedy: I am a doctor. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak") HERE:

http://niceguidelines.blogspot.co.uk/2011/03/pace-trials-prof-peter-white-exercise.html

4. Prolonged Abnormal Effects of Exercise in Myalgic Encephalomyelitis and Chronic
Fatigue Syndrome
http://www.jacobspublishers.com/images/Physiotherapy/J_J_Physiot_Exerc_1_1_001.pdf

"Exercise, especially exercise programs, has various beneficial health effects. However, in the case of Myalgic Encephalomyelitis and chronic fatigue syndrome physical exertion can induce prolonged negative effects on the patient’s condition (post-exertional “malaise”).

The exacerbation of symptoms after exercise can plausibly be explained by exertion-induced abnormalities in ME/ CFS. In order to unravel the pathophysiology and to protect the patients’ from iatrogenic harm of exercise regimes, it is essential to asses and diagnoses patients objectively."

5. Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial
http://www.bmj.com/content/350/bmj.h227/rr-10

6. Australian Researcher Challenges Measures of "Recovery" in PACE Trial
http://cfstreatment.blogspot.ie/2015/01/australian-researcher-challenges.html#sthash.bmmt0iZc.e2e3nZ3D.dpuf

7. Revalidation Update: why doctors who use or promote CBT or GET for ME/CFS will fail their revalidation
http://niceguidelines.blogspot.com/2012/12/revalidation-update-why-doctors-who-use.html

"10 years ago, the Belgian government opened their five treatment centres for ME/CFS, the so-called reference centres, to cure 70% of ME/CFS patients with CBT and GET as that is what the Belgian Simon Wessely, psychiatrist Prof. Dr. Boudewijn Van Houdenhove, and his Nijmegen colleagues have been saying for decades.
The Belgian government invested a lot of money, €15 million, but they also reviewed things regularly.
Each review showed that CBT and GET were making things worse.
So, the centres got more time, and more money to improve things.
And after 10 years of treating ME/CFS patients with CBT and GET in five Belgian government centres, it is now crystal clear that CBT and GET make things worse in ME/CFS, which means that CBT and GET harm ME/CFS patients."
For the full story see http://www.pugilator.com/awareness/is-this-the-end-for-the-belgian-cfs-reference-centers

8. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - 53 pages!

https://niceguidelines.files.wordpress.com/2011/12/fall2011-kindlon-harms-paper-59-111.pdf
 

Kyla

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I'm afraid that this offer can only apply to the UK due to the high cost of doing so:

We can send a copy of the MEA purple booklet to any GP surgery in the UK - free of charge

This booklet summarises and references (over 300 research and clinical trial papers are listed) all the key research evidence in relation to:

Nomenclature

Epidemiology

Research findings

Clinical assessment: History - Examination findings - Investigations - Differential Diagnosis

Management:

Symptomatic relief for pain, sleep, orthostatic intolerance etc

Drugs aimed at the underlying disease process - Rituximab etc

Other aspects of management - disability aids, education, employment, energy management and pacing, pregnancy etc

Children and adolescents

Severe ME/CFS

Prognosis and quality of life

MEA purple booklet:

http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/
Has the MEA considered making an e-book version? (It could just be a pdf)

I suspect a lot of patients would be willing to pay a few dollars for this, particularly if the money went to research, or to supporting the MEA .
Those in other countries could then easily print it out and take to their doctor.

And how often is this updated? Ie - does it cover the IOM report and research findings from this year?
 

Kyla

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Can people post links to the most useful papers on mecfs that patients can take to their doctors? Like how "CBT/GET" are harmful, etc. Or papers that prove the physical, organic illness,etc. Or anything major being done in research, etc.

The goal here is as long as doctors are accessing inaccurate, outdated, information as in Uptodate, for e.g., they will not be able to help us.

Papers or News from prestigious universities, or high-quality journals are much better than obscure ones.
There is also this clinician guide:
http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf
 

WillowJ

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The IOM report has everything you need. It's a large collection of relevant biomedical research, reviewed by a committee from a prestigious institute.
Your doctor will likely like this best of anything else available, as it is produced and reviewed by a well-known organization. So the doc will assume they know what they are talking about.
iom.edu/mecfs
(points to: http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx )
 
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Has the MEA considered making an e-book version? (It could just be a pdf)

I suspect a lot of patients would be willing to pay a few dollars for this, particularly if the money went to research, or to supporting the MEA .
Those in other countries could then easily print it out and take to their doctor.

And how often is this updated? Ie - does it cover the IOM report and research findings from this year?
1 Yes - an e-version pdf of the MEA purple booklet is something we are considering for the 2015/2016 edition. This could be added to the MEA online literature shop on the website.

2 We already have a quite a large number of overseas sales. Overseas versions have also been produced and distributed

3 I update the content every year, or every two years

4 Copy for the 2015/2016 edition, which will include a summary of the NIH and IoM reports, is almost ready. We are aiming to have the 2015/2016 edition ready in late September or early October.
 

CFS_for_19_years

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One more to add:

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

Note that this was published in a peer-reviewed journal. It was done even before the reanalysis by Alem Mathees took place.