Media coverage of Matthees PACE recovery reanalysis: post links here

[CFS_for_19_years]

the authors also incorporated people who did not have chronic fatigue syndrome which results rotten.[....]. .

If the analysis is confirmed, then it will have the dubious scientific study be retracted. But the withdrawal is a drastic punishment for perpetrators and the university. And even if that happens, the damage is already done. Exercise and therapy entered the practitioners manners and it will take years for mentalities to change. Today, the chronic fatigue syndrome is considered a fun way by the media treated the news.

Well, yes, the results were indeed rotten. And the perpetrators should be punished. The mentalities of practitioners manners may indeed take years to change. The media should find other ways to have fun and certainly not at our expense.

 

[Yogi]

‘Matter over mind: The strange case of the ME study’ | WDDTY magazine | October 2016
From What Doctors Don’t Tell You magazine, October 2016. Words by Bryan Hubbard.


Some doctors still believe that CFS/ME is mostly in the mind, a view that was supported by the influential PACE study. Now the researchers have been forced to reveal that they had inflated the figures.


http://www.meassociation.org.uk/201...-of-the-me-study-wddty-magazine-october-2016/

Good article from WDDTY.

I did not like the last sentence "ME truly isn’t all in the head. I have seen a number of articles recently stating ME is "not in the head".

ME is in the head along with other parts of the body. They should say "not in the mind"

 

[Yogi]

Julie's radio talk on 7 October.

http://forums.phoenixrising.me/index.php?threads/newsworks-julie-rehmeyer-on-radio.47268/

 

[mango]

Aftenposten, Norway
http://www.aftenposten.no/meninger/debatt/Kort-sagt-9-oktober-606321b.html

Translation by Google

Today's short debate.

Research fiddling or rabid patients?

Who owns the truth about ME? Patients, who know the disease in their own body, or researchers who recommend treatments patients say makes them sicker? For five years a large British study has had a tremendous influence on the perception of ME, also in Norway, with its claims that ME can be cured with cognitive therapy. Now the facade cracks, and there is doubt whether the results were as good as they were claimed to be.

Raw data from Pace study have now been released, and an independent analysis of the data showed recently that there is no significant difference between standard medical follow-up and treatment with cognitive therapy. The release of data came after a long struggle in the British judicial system, and a smear campaign against patients, where they were called "borderline of sociopaths or psychopaths".

It is time that there be a settlement in Norway with the idea that ME patients can think themselves healthy. Major knowledge summaries state what patients have long known - ME is a physical illness. It is high time that patients are listened to and treated with respect.

Trude Schei, Assistant Secretary General, Norwegian ME Association

 

[Yogi]

Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is.


http://healthinsightuk.org/2016/09/...fraction-as-effective-as-experts-claim-it-is/

Separate thread on this

http://forums.phoenixrising.me/inde...-journalist-on-pace-trial-september-26.47102/



Reproduced on:

http://www.hippocraticpost.com/heart-lung/statins-critics-shouldnt-silenced/



New article by Jerome Burne on Sunday 9 October:

The serious trust deficiency afflicting medical advice and what to do about it

http://healthinsightuk.org/2016/10/...cting-medical-advice-and-what-to-do-about-it/


Please read and leave comments on the Hippocratic Post as he said it is read by doctors and he is trying to get published in mainstream UK media.

 

[mango]

Article (based on RME's press release) in Kurera, a Swedish magazine:

http://kurera.se/forskningsfusk-upptackt-i-stor-studie-om-kroniskt-trotthetsyndrom/

Google translate, English:
https://translate.google.se/transla...tudie-om-kroniskt-trotthetsyndrom/&edit-text=

https://twitter.com/i/web/status/785770915648856064

 

[Yogi]

Dr Ronald Hoffman podcast

http://forums.phoenixrising.me/index.php?threads/podcast-by-dr-ronald-hoffman-on-pace-trial.47387/

 

[Cheshire]

Doctor's Diary: Gove was right, we have had enough of experts

Last November, the findings of a study (the Pace Trial) demonstrating much benefit from Cognitive Behaviour and Graded Exercise therapy, with a greater than 20 per cent recovery rate, elicited 1,200 critical comments from Telegraph readers, who drew attention to the uncertainty as to how “recovery” was defined.

http://www.telegraph.co.uk/wellbein...gove-was-right-we-have-had-enough-of-experts/

 

[worldbackwards]

Here we are then, stood next to Michael Gove...

 

[AndyPR]

Doctor's Diary: Gove was right, we have had enough of experts

It's not experts I've had enough of, it's charlatans posing as experts that I've had enough of.

 

[Battery Muncher]

Yeah, Le Fanu's article makes no sense.

As he even admits, the reanalysis of the PACE trial involved several experts. He names Rebecca Goldin and Jonathan Edwards here, who both deserve huge credit, and as we know there have been many others whose efforts are greatly appreciated (Racianello and his virology blog etc.).

 

[trishrhymes]

I seem to remember Le Fanu wrote a much better piece after the PACE trial paper last October. Can't find the link.

 

[Esther12]

There is this 'expert class' in the UK, that's not made up of respectable experts, but rather those who are willing to have the right thoughts, and say the right things. I do think that the PACE trial is a good example of this problem of UK respect for 'fake' experts, and how it can encourage a lazy disinterest in looking critically at the evidence.

 

[Yogi]

Doctor's Diary: Gove was right, we have had enough of experts


http://www.telegraph.co.uk/wellbein...gove-was-right-we-have-had-enough-of-experts/

This is a good article and glad to see it now making it further into the mainstream media and especially the right wing media.

There has been a lot recently in the MSM about how people are getting fed up of "experts" and this will give the scandal of the PACE trial wider readership.

I have been thinking along the same lines about "having had enough of experts". Think of other examples such as experts advising attacking Iraq based on flimsy evidence of Weapons of Mass destruction. Experts in the banking sector and Central banks who failed to see the financial crash of 2008 when it was obvious that house prices cannot continue to go up indefinitely in perpetuity. Far too much reliance is place on some so called experts.

There appears to be far too much emphasis in some sections of society on "evidence" by certain "experts" who are perceived to be an authority to the exclusion of other critical and dissenting voices. In many cases these authoritative experts have huge conflicts of interests and are speaking as vested interests rather than so called experts.

They should not be perceived as gods and this is what many are now criticising and challenging.

Despite the fact we regard and it was mentioned Goldin and Edwards as experts. As PACE authors published lots of crap for 30 years in "peer reviewed journals" on CFS (which similarly have an undeserved god-like reputation) the PACE authors and Wessely in particular are perceived to be the experts on ME by the health bodies, government, media and lawyers and judges etc.

Good to see the PACE trial getting more attention.

 

[Yogi]

German Radio and article.

Click on right link for audio to hear the article including Philip Stark, professor of statistics at the University of California at Berkeley and charlatan Michael Sharpe on Deutschlandfunk.

http://www.deutschlandfunk.de/chron...en-fechten.676.de.html?dram:article_id=368979

Patienten fechten Studienergebnisse an
Die Krankheit ist schwer zu diagnostizieren, ihre Ursachen sind unbekannt: das Chronische Erschöpfungssyndrom, auch Myalgische Enzephalomyelitis genannt. In einer Studie haben Wissenschaftler verschiedene Therapieoptionen getestet - und zwei für unwirksam erklärt. Patienten halten die Untersuchungen für unglaubwürdig und setzen sich zur Wehr.

Von Anneke Meyer


Alem Matthees muss mit seinen Kräften gut haushalten. Ein Telefonat, befürchtet er, könnte ihn zu sehr erschöpfen. E-Mail schreiben geht. Da kann er Pausen machen. Deshalb antwortet er per Mail auf die Frage, warum er an der Aussagekraft einer großen klinischen Studie zum chronischen Erschöpfungssyndrom zweifelt.

"Die Änderungen am Versuchsprotokoll erschienen mir fraglich und dazu die Weigerung der Forscher die Ergebnisse nach dem ursprünglichen Protokoll herauszugeben

Google can translate it for you.

patients are challenging study results
The disease is difficult to diagnose its causes are unknown: chronic fatigue syndrome, also known as Myalgic Encephalomyelitis. In one study, scientists have different treatment options tested - and two declared invalid. Patients keep the tests for credibility and defend themselves.

By Anneke Meyer


Alem Matthees must economize well with his powers. A telephone call, he fears, might wear him out too much. Email is write. Since it can take breaks.Therefore, he replies by e-mail to the question why he doubts the validity of a large clinical trial for chronic fatigue syndrome.

"The changes to the trial protocol seemed questionable and to publish the results to the original protocol, the refusal of the researchers."

Michael Sharpe said:
"We had six opinions before we published our results in a prestigious scientific journal. What we are talking about now, is on blogs! The findings of the critics were tested by any experts and written by people who have a bone to pick. With what we mean by science, which has nothing to do. "

 

[trishrhymes]

The problem with 'experts' is the misuse of evidence by governments to get their own way. There are almost no people with a scientific background going into politics in the UK.

Politicians' idea of 'evidence based policy' is to decide what they want proved, then find an expert who will 'prove' it for them, discarding any evidence that doesn't suit their own theory. That's what happened with PACE. That's not science.

 

[worldbackwards]

Michael Sharpe said:
"We had six opinions before we published our results in a prestigious scientific journal. What we are talking about now, is on blogs! The findings of the critics were tested by any experts and written by people who have a bone to pick. With what we mean by science, which has nothing to do. "

Pulling rank. Do you think they're making an effort to stop it being published? Because unless they do that, this is only a holding tactic and a cheap one at that.

 

[Barry53]

ME is in the head along with other parts of the body. They should say "not in the mind"

Yes, there should be a clear distinction between the mind and the brain. Roughly (very roughly) analogous to the relationship between software, and the hardware that hosts it.

 

[Cheshire]

Not about the PACE trial, but it refers to the reanalysis:

We Cannot Continue to Let Doctors 'Gaslight' Chronic Illness Patients

“Gaslighting” is a form of psychological abuse, whereby the perpetrator attempts to convince their victim to doubt their own perceptions, with the intent of making them believe they are in fact “crazy.” As the victim comes to doubt their sanity, they become more reliant on their abuser and less connected with the outside world. The term comes from the 1938 play-turned-film “Gaslight,” in which a husband convinces his wife she is going “insane,” by manipulating her and controlling her environment. It is not hard to see how this plays out for the chronically ill.
[...]
Criticism of the PACE trials has been building ever since it was published. Scales for measuring illness were so poorly designed that patients could be simultaneously qualified as disabled enough for participation and well enough to be “cured.” These measures were tinkered with as the study progressed. Those who were unwell enough to attend regular appointments at the hospital were discounted, meaning only the most well people with ME/CFS were studied. Patients were given brochures promoting the effectiveness of CBT and GET as treatments for their illness. The patients who were determined “cured” were deemed as such solely on the basis of a subjective survey, not objective measures such as employment and exercise tests.

Yet it is only now, after years of campaigning, that the researchers behind PACE are being forced to release their raw data. The belief that ME/CFS was psychosomatic was so ingrained, that it has taken five years for their research methods to be brought into question. Meanwhile, this research has had real implications for ME/CFS patients. Treatments such as GET have been documented to cause real harm to people with ME/CFS. And who knows how many seriously ill ME/CFS patients were denied a diagnosis or real treatment on the basis of these trials?

https://themighty.com/2016/10/mecfs-and-gaslighting-what-to-do-when-doctors-dont-believe-you/

 

[Yogi]

New thread on SOLK.NL propaganda in attempting to defend PACE.

http://forums.phoenixrising.me/inde...ropaganda-from-solk-on-pace-reanalysis.47594/