Tuesday, July 19, 2016

Neuromuscular Strain causes symptom flare-ups in ME/CFS

RESEARCH ARTICLE

Neuromuscular Strain Increases Symptom Intensity in Chronic Fatigue Syndrome

Peter C. Rowe , Kevin R. Fontaine , Megan Lauver , Samantha E. Jasion , Colleen L. Marden , Malini Moni , Carol B. Thompson ,Richard L. Violand

 * Abstract* Chronic fatigue syndrome (CFS) is a complex, multisystem disorder that can be disabling. CFS symptoms can be provoked by increased physical or cognitive activity, and by orthostatic stress. In preliminary work, we noted that CFS symptoms also could be provoked by application of longitudinal neural and soft tissue strain to the limbs and spine of affected individuals. In this study we measured the responses to a straight leg raise neuromuscular strain maneuver in individuals with CFS and healthy controls. We randomly assigned 60 individuals with CFS and 20 healthy controls to either a 15 minute period of passive supine straight leg raise (true neuromuscular strain) or a sham straight leg raise. The primary outcome measure was the symptom intensity difference between the scores during and 24 hours after the study maneuver compared to baseline. Fatigue, body pain, lightheadedness, concentration difficulties, and headache scores were measured individually on a 0–10 scale, and summed to create a composite symptom score. Compared to individuals with CFS in the sham strain group, those with CFS in the true strain group reported significantly increased body pain (P = 0.04) and concentration difficulties (P = 0.02) as well as increased composite symptom scores (all P = 0.03) during the maneuver. After 24 hours, the symptom intensity differences were significantly greater for the CFS true strain group for the individual symptom of lightheadedness (P = 0.001) and for the composite symptom score (P = 0.005). During and 24 hours after the exposure to the true strain maneuver, those with CFS had significantly higher individual and composite symptom intensity changes compared to the healthy controls.

We conclude that a longitudinal strain applied to the nerves and soft tissues of the lower limb is capable of increasing symptom intensity in individuals with CFS for up to 24 hours.

These findings support our preliminary observations that increased mechanical sensitivity may be a contributor to the provocation of symptoms in this disorder.

Citation: Rowe PC, Fontaine KR, Lauver M, Jasion SE, Marden CL, Moni M, et al. (2016) Neuromuscular Strain Increases Symptom Intensity in Chronic Fatigue Syndrome. PLoS ONE 11(7): e0159386. doi:10.1371/journal.pone.0159386

Editor: Ute Vollmer-Conna, University of New South Wales, AUSTRALIA

Received: March 17, 2016; Accepted: July 3, 2016; Published: July 18, 2016

More @ Plosone

 

Saturday, June 25, 2016

Professor Hanson: further evidence against the ridiculous concept that ME/CFS is psychological


Professor Maureen Hanson: "our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin"

By Krishna Ramanujan, June 24, 2016, Cornell University:

  ksr32@cornell.edu

  Indicator of chronic fatigue syndrome found in gut bacteria

  In a study published June 23 in the journal Microbiome, the team describes how they correctly diagnosed myalgic encephalomyeletis/chronic fatigue syndrome (ME/CFS) in 83 percent of patients through stool samples and blood work, offering a noninvasive diagnosis and a step toward understanding the cause of the disease.

  “Our work demonstrates that the gut bacterial microbiome in ME/CFS patients isn’t normal, perhaps leading to gastrointestinal and inflammatory symptoms in victims of the disease,” said Maureen Hanson, the Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics and the paper’s senior author.

  “Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin,”

  More @ cornell.edu

Friday, June 3, 2016

Ester Crawley given a million pounds to replicate FITNET's NULL effect


Ester Crawley given a million pounds to replicate FITNET's NULL effect

http://www.nets.nihr.ac.uk/projects/hta/14192109

Ester Crawley's Study will be based on the following Dutch study also called FITNET which ignored their own NULL effect just like the PACE trial did.




Because it's obviously more important to make sure that people who are severely ill do not get proper treatment and to make sure that their kingdom which is based on fake tan doesn't come tumbling down. The Sad State of Affair of greed and denial medicine ...

  Nijhof SL, Priesterbach LP, Uiterwaal CS, Bleijenberg G, Kimpen JL, van de Putte EM, Internet-based therapy for adolescents with chronic fatigue syndrome: long-term follow-up. Pediatrics. 2013 Jun;131(6):e1788-95. doi: 10.1542/peds.2012-2007. Epub 2013 May 13.

  ( Bleijenberg G aka the Dutch Peter D White or Simon Wessely and van de Putte EM aka the Dutch Ester Crawley)

  "Cognitive behavioral therapy (CBT) is known to be an effective treatment of adolescents with chronic fatigue syndrome (CFS), but its availability is limited." No it's not known to be effective but they want us to believe it is effective which is a totally different thing ... The reality is, as a recent review of the PACE trial showed, that CBT and GET are totally useless !!! But the BIG LIE must obviously continue ...

  "Fatigue in Teenagers on the Internet (FITNET), an Internet-based CBT program for adolescents with CFS, has been developed as an alternative to face-to-face CBT. Recently, its short-term effectiveness has been proven in a randomized clinical trial. Here we aimed to assess the long-term outcome of CFS in adolescents after FITNET treatment and after usual care."

  "Conclusion: The short-term effectiveness of Internet-based CBT on adolescent CFS is maintained at LTFU. At LTFU, usual care led to similar recovery rates, although these rates were achieved at a slower pace."

  "At LTFU, usual care led to similar recovery rates" aka as a NULL effect ...

  http://www.ncbi.nlm.nih.gov/pubmed/23669515

 

Tuesday, May 17, 2016

Unexpressed feelings towards lying psychiatrists? Then here is the reason why ...

Unexpressed feelings towards lying psychiatrists? Then here is the reason why ... If you have some unexpressed feelings towards lying psychiatrists like Simon Peasley, Pizza White, Michael Blushing and Trudies Itchyshoulder then here you can read why you have them ... Please make sure you have got a bucket ready otherwise you will need some urgent CeeBeeTea If you are really desperate then here is the link to the study http://psycnet.apa.org/psycinfo/2016-23898-001/

Wednesday, April 20, 2016

Great letter by Professor Hooper asking for retraction of the PACE trial 

Great letter by Professor Hooper asking for retraction of the PACE trial via meactionuk.org.uk, April 15, 2016:

  Dear Dr Horton,

  I write to call again for the retraction of the PACE study paper by White PD et al. (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. "Lancet "2011;377:823-836).

  MORE @ meactionuk.org.uk

 

Friday, April 8, 2016

Published, independent review of the PACE trial‏

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


Corresponding author: Vink, Family Physician, Soerabaja Research Center, Amsterdam, The Netherlands
E-mail: markvink.md@outlook.com

Abstract
The main findings reported in the PACE trial were that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) were moderately effective treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and fear avoidance beliefs constituted the strongest mediator of both therapies. These findings have been challenged by patients and, more recently, a number of top scientists, after public health expert Tuller, highlighted methodological problems in the trial. As a doctor who has been bedridden with severe ME for a long period, I analyzed the PACE trial and its follow-up articles from the perspectives of a doctor and a patient. During the PACE trial the eligibility criteria, both subjective primary outcomes, and most of the recovery criteria were altered, creating an overlap of the eligibility and recovery criteria; consequently, 13% of patients were considered “recovered,” with respect to 1 or 2 primary outcomes, as soon as they entered the trial. In addition, 46% of patients reported an increase in ME/CFS symptoms, 31% reported musculoskeletal and 19% reported neurological adverse events. Therefore the proportion negatively affected by CBT and GET would be between 46% and 96%, most likely estimated at 74%, as shown in a large survey recently conducted by the ME Association. Medication with such high rates of adverse events would be withdrawn with immediate effect. There was no difference in long-term outcomes between adaptive pacing therapy, CBT, GET and specialist medical care, and none of them were effective, invalidating the biopsychosocial model and use of CBT and GET for ME/CFS. The discovery that an increase in exercise tolerance did not lead to an increase in fitness means that an underlying physical problem prevented this; validates that ME/CFS is a physical disease and that none of the treatments studied addressed this issue.

FULL article in Journal of Neurology and Neurobiology

Tuesday, March 29, 2016

RIP Mr Cicero; German jazz singer Roger Cicero has died after being diagnosed with ME/CFS #PACEtrial #NOmorePsychiatricLIES


RIP Mr Cicero; German jazz singer Roger Cicero has died after being diagnosed with #MEcfs #PACEtrial #NOmorePsychiatricLIES

  dw.com, Mar 29, 2016:

  Germany's best-known jazz performer has died after being diagnosed with chronic fatigue syndrome. His career spanned almost 15 years, making him one of Germany's most beloved musical celebrities.

Friday, March 25, 2016

Thursday, March 24, 2016

#PACEtrial Psychiatry is much worse than #DiederikStapel psychology: Two great articles about the seriously flawed PACE trial

Two great articles about the seriously flawed PACE trial

  Editorial: On PACE by Trevor Butterworth, Mar 21, 2016: "And the thing about patients who either suffer from a rare disease, or a more common and inexplicable one as with ME/CFS, is that they are usually a formidable resource—a network of distributed experts who have sifted and weighed the scientific research with the kind of avidity you would expect, given that their lives depended on it. In pharmacology, rare disease patient groups are highly respected and are seen as partners in research rather than just subjects and consumers of studies."

  MORE @ stats.org

  AND

  PACE: The research that sparked a patient rebellion and challenged medicine by Professor Rebecca Goldin, Mar 21, 2016 :

  "The results from PACE (including these) have been published in prestigious journals and influenced public health recommendations around the world; and yet, unraveling this design and the characterization of the outcomes of the trial has left many people, including me, unsure this study has any scientific merit. How did the study go unchallenged for five years? And how could journalists have recognized the problems before reporting unqualified, but unjustified, good news?"

  MORE @ stats.org

Tuesday, February 16, 2016

Nice explanation of PACE trial nonsense and Wessely psychiatry

Nice explanation of PACEtrial nonsense and Wessely psychiatry by @dwbarlow: "If the only tool you have is a hammer you tend to see every problem as a nail"

Saturday, February 13, 2016

Dr Esther Crawley acknowledges in the MAGENTA protocol that ME/CFS patients will not benefit from graded exercise therapy


The MAGENTA trial aka the PACEtrial for children involves "Children between 8 and 17 years old who have been diagnosed with CFS/ME." So they will be experimenting and using their unethical and harmful treatment on 8 year olds ...

"The aim of this study is to find out how successful and cost-effective GET is ... in children" with ME/CFS.
We do know that subjective outcomes are not reliable so what does the magenta trial use?  "The children and their parents are then interviewed in order to judge how well the treatment is working." So no objective measures are used as usual ... However the principal investigator of this trial also writes that "What are the possible benefits and risks of participating? Participants will not benefit directly from taking part in the study" which means that children with ME/CFS who are getting treated with GET will not benefit from it ... Why waste a million £££ on it if she already knows that the treatment doesn't work ?? If you don't know the answer to that question just read on or scroll down ...

Furthermore GET causes severe relapses if patients do have ME/CFS unless the diagnosis is wrong or people are in remission which happens in 5 to 7% but even they have to be careful with exercise therapy. So if you subject people with ME/CFS to exercise therapy you are basically torturing patients. Yet what do they write in the protocol? "it may prove enjoyable contributing to the research. There are no risks of participating in the study."
So if you acknowledge that the treatment doesn't work like the principal investigator Dr Esther Crawley is doing in the protocol then you are basically wasting shedloads of money to make sure that people with this debilitating neuroimmune disease do not get proper treatment; shameful doctoring as usual from the denial Brigade who have been ignoring evidence for decades. And according to medical boards doctors should not ignore evidence which goes against the duties of a doctor ... Which means that the denial Brigade should be suspended or struck off ...
You can read the delightful protocol here: http://www.isrctn.com/ISRCTN23962803

Thursday, February 11, 2016

"I’m tired of having to counter the same propaganda ad nauseum."

"I’m exhausted by the politics and the endless endless lies and spin. I’m tired of having to counter the same propaganda ad nauseum." YES that sounds like the denial psychiatrists Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder and their PACEtrial propaganda but as a matter of fact it's from the juniordoctorblog explaining why they strike.

Just posted this on Action for ME Facebook site to get behind the PACE trial data sharing

Well guys it's pretty simple you take a big black marker and you anonimise the data; when patients signed the consent form to take part in the trial they consented for the data to be released in an anonymous way to independent researchers etc; if however some patients change their mind you just exclude their data from release. It's that simple. And as you probably know patients can withdraw their consent at anytime. It's time that you as Action for ME take a stand against the BAD PACE trial "science" which is hurting hundreds of thousand people worldwide.

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