Video: "The ME scandal"

Marky · Mar 28, 2021

Hey

Someone anonymous from Norway have produced a very thorough two part series on different topics (PACE, Lightning Process etc.)

It has english subtitles so everyone can watch

https://www.youtube.com/watch?v=5QggxcOKm18

alktipping · Mar 28, 2021

all that hand waving is exhausting .

Campanula · Mar 30, 2021

Just finished seeing this and it's really, really good. It's a long watch, but absolutely undoubtably worth it. I've known about these things going on for quite some time, but seeing them systematized and presented in a coherent framework is pretty shocking. I'm wondering what will happen to the central actors in the scandal when all this reaches the mainstream? Will there be lawsuits? Will it change the way medical research is being conducted?

Invisible Woman · Mar 30, 2021

Campanula said: ↑

It's a long watch, but absolutely undoubtably worth it.
Click to expand...

I tried and lasted a couple of minutes. Normally, I'm fine with subtitles but the hands moving either side of where the subtitles appear just melted my brain & I couldn't filter them out.

Trish · Mar 30, 2021

Invisible Woman said: ↑

I tried and lasted a couple of minutes. Normally, I'm fine with subtitles but the hands moving either side of where the subtitles appear just melted my brain & I couldn't filter them out.
Click to expand...

Me too. I wonder whether the video could be edited by whoever produced it to remove the moving hands.

JemPD · Mar 30, 2021

Invisible Woman said: ↑

I tried and lasted a couple of minutes. Normally, I'm fine with subtitles but the hands moving either side of where the subtitles appear just melted my brain & I couldn't filter them out.
Click to expand...

Yeah i agree unfortunately. Subtitles are very hard at the best of times, but attempting to tune out the movement while reading is impossible for me after just a few minutes. Man that is a serious 'battery drain' i'll never get my microwave ready-meal tonight if i carry on trying to watch it. Shame as it looks good

Sly Saint · Mar 30, 2021

Don't know if this helps
here are the subtitles for the first part (PACE trial)

In Norway today, it’s estimated that around 20.000 people live with ME.
Tens of millions suffer from the disease worldwide,
also known as CFS.
It’s more than 50 years since WHO-
-classified ME as a neurological illness.
But although psychological causes-
-should be excluded to obtain an ME diagnosis,
many still focuses on that.
One of the greatest challenges is that “ME”,
in the absence of better knowledge,
has become a collective term for different conditions.
Many believe that ME is synonymous with fatigue.
But fatigue is a symptom of many diseases.
That’s like saying that everyone who coughs has COPD.
ME must not be confused with all those-
-who suffer from general fatigue, tiredness,
overtraining or depressive exhaustion,
which are likely 10 times as many.
ME involves many other symptoms, and you have to fulfill-
-strictly defined diagnostic criteria to obtain a ME-diagnosis.
ME patients are not just tired.
They suffer from extreme fatigue,
and a disease that affects the body’s vital functions.
25% of the patients are housebound or bedridden,
and ME patients compared to patients with cancer, rheumatism-
-or depression, have the lowest score on all parameters of physical function.
pain, general health, vitality and social function,
In the book “The hidden ones”,
we hear about health personnel-
-who describe patients as ME-Talibans,
allegedly since they have an extreme conviction-
-that ME is physiological.
A despaired physician at one of Norway’s largest hospitals tells that ME patients-
-are placed where someone is stupid enough to handle them,
since nobody wants them.
The same book tells the story of a ME patient-
-who was bedridden in a nursing home.
He used a mask due to light sensitivity,
could barely move,
and received nutrition through a nasogastric tube.
But since he had ME,
the physician didn’t consider him to be particularly ill.
The nursing home refused to care for him,
so his family had to clean him of his own feces.
One of the physicians expressed;
“Those ME-patients! If the fire alarm goes off, I’m sure they all run”.
Such stigmatization is nothing new.
When the Hungarian physician Ignaz Semmelweis-
-discovered that doctors should wash their hands-
-to reduce women’s risk of maternity fever,
he was ridiculed.
Doctors wouldn’t accept that they contributed to the deadly disease.
The deadly deficiency disease scurvy-
-was believed to be a result of laziness.
And well into the 20th century,
women with epilepsy were told they suffered from hysteria,
while PMS was pure imagination.
Physicians claimed stomach ulcers were caused by stress,
and diabetes was explained by lack of stamina.
Cancer has been explained as the result of a weak character.
When AIDS spread in the US in the early 1980s,
physicians claimed that the disease-
-was caused by the stress of being gay.
Until abnormalities in the nervous system were detected,
MS was referred to as "fakers disease".
Allthough it has been scientifically rejected,
similar stigmatizations still persist about ME today.
"But ME-people just lay there blindfolded in a dark room,
they are easy to beat up"
The PACE trial
One of the reasons ME patients continue to be stigmatized,
can be traced to a group of UK psychiatrists.
Their theories were supposed to be proved by the PACE trial.
PACE was a large trial in the 2000s with more than 600 patients,
researching the response from gradual exercise (GET)-
-and Cognitive Behavioural Therapy (CBT).
CBT is a psychotherapy-
-aimed to break down thoughts and behavior-
-that theoretically maintain the ME-disease.
The investigators were largely a group of UK psychiatrists,
who claimed that ME is caused by-
-false illness beliefs and avoidance behavior,
as seen in this PACE trial manual.
Gradual exercise was based on the theory that ME-
-is caused by inactivity and deconditioning.
The patients were supposed to ignore symptoms,
which is dangerous.
Since by using energy you don’t have,
you risk long-term worsening.
The investigators claimed that fatigue and ME-
-were two sides of the same coin,
and included loosely defined patients,
that just as well could suffer from something else.
The investigators had been consultants for UK Health Authorities-
-and insurance companies based on their theories.
The same companies that would save huge sums-
-if ME was not recognized as biomedical.
Hence, much was at stake.
Already from the launch of the PACE trial in 2003,
the most comprehensive study on ME ever,
it was clear that the results would be influential on policy,
peoples’ opinion and future research.
Newspapers published the results in bold headlines,
stating that the cure for ME was exercise.
It was later revealed that the study was deeply flawed.
Before the study started,
the investigators defined the requirements for what-
-“improvement” and “recovery” meant in statistical terms.
Yet, they changed these definitions during the trial.
Now “recovery” was so loosely defined,
that patients with reduced functioning-
- and increased fatigue from the treatment,
could be considered recovered.
The criteria were changed along the way,
resulting in a much better outcome.
The investigators tried to suggest that-
-the original criteria for “recovery” was too high,
and that over half of the general working population-
-did not meet such criteria.
Yet, other researchers revealed that the PACE investigators-
did not base this claim on numbers-
-reflecting the general working population.
As 1/3 was above 60 and 1/5 was long-term ill or disabled.
Without those ill/disabled and above 60,
93% of the general population-
-met or surpassed the original recovery criteria of 85,
with a median of 100.
This did not stop the PACE investigators from changing the criteria-
-for an ME patient’s recovery down to 60.
Equaling the physical function of other chronic diseases.
It's a paradox;
-the participants’ score for function and fatigue-
-could qualify a person to participate in the trial,
but already before the trial started be considered as cured.
To qualify;
you needed a score of 65 or less for physical functioning,
while at the end of the study,
a patient was considered recovered with a score of 60.
More than 13% of the patients-
-were considered recovered-
-on one or both of the measures of physical function-
-and fatigue before the study had started.
A fact not disclosed to the public.
While the threshold for being registered as recovered was ridiculously low,
the study made it difficult to register worsening.
For patients staying in the study,
worsening had to be registered in two consecutive follow-ups-
- out of three, to be included.
Hence, worsening was excluded-
-if it appeared between follow-ups,
or after the second follow-up (half-way).
Harmful effects often occur over time.
Patients push themselves with adrenalin and pure will,
before they “hit the wall”.
UK Parliament member Carol Monaghan stated the following-
-regarding the PACE trial in 2019:
The investigators broke research ethics-
- when they influenced participants during the trial.
They sent newsletters with patient stories-
-that described how much the treatment had helped.
The newsletters informed that the treatment-
-now was recommended by an UK government committee.
They failed to mention that one of the PACE investigators-
-was a member of this committee.
As Jonathan Edwards, Professor Emeritus in medicine, stated;
“They’ve set this trial up to give the strongest possible-
- chance of there being a placebo effect that you can imagine”.
It did not stop there.
The investigators failed to inform-
-that they had financial ties to health insurance companies.
Which was only declared when the results were published.
The investigators where thereby in breach of e.g. the Helsinki Declaration,
which state that participants should be adequately informed-
-of conflicts of interest and institutional affiliations.
So that patients' well-being is the focus.
Many worked to reveal the study’s flaws.
Particularly ME patient Alem Matthees,
who through the First-Tier Tribunal-
-requested the background data,
as the investigators did not want to hand this over.
Matthees basically sacrificed himself,
as his efforts led him to become bed-bound.
What a hero!
In an attempt to stop this release, the investigators claimed,
as seen in the Tribunal’s verdict, to be victims of harassment-
-and “vitriolic” patients who would publicize participants’ names to discredit the study.
The defense included claims of threats.
And the editor of The Lancet, where the study was published,
stated that patients who requested the data were a-
“very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda”.
Queen Mary University, which was affiliated with the lead investigator,
spent £250,000 in legal fees to prevent the data from being released.
The verdict stated that the claim of activist behavior was "grossly exaggerated",
and that the claim that those who opposed the study were-
-young psychopathic men, was "wild speculations".
Furthermore, the investigators admitted that no threats-
-had been made to themselves or participants.
To claim harassment is a normal tactic from these people,
to marginalize criticism against their research.
The data were released.
In the trial, the investigators claimed that around 60% of the patients improved.
Now, other researchers made their own review of the published data.
They found that whith the original criteria, only 20% (not 60) had effect from CBT or GET.
Add that 10% of the patients in the control group also improved.
Hence, just 10% of the patients had experienced an improvement-
-that could be attributed to GET/CBT.
This was despite that patients felt pressured to report improvement.
An open-label study with cognitive manipulation,
will naturally show some effect on subjective end-points due to bias.
When published, the objective data showed negative outcomes.
The investigators also claimed that 22% of patients recovered.
The released data showed that only 4% in the GET group and 7% in CBT recovered.
If you include the control group, only 4 % in CBT and-
-1% in GET recovered based on these treatments.
There were no statistically significant differences-
-between these recovery rates and the control group.
At the press conference, the investigators stated that;
“twice as many got back to normal”.
In 2019, they stated that they preferred the new criteria, as those are more in line-
-with the literature they follow and their own clinical experience.
That's not how research works.
You pre-define endpoints to avoid such expectation bias.
You can’t make this s**t up!
Ron Davis, Director at the Stanford Genome Technology Center, stated;
“This is a classic bad study”. “The study needs to be retracted.-
-I would like to use it as a teaching tool to have medical students read it and ask them;
–how many things can you find wrong with this study?”
Professor in psychology Jame Coyne, stated that the PACE investigators offer unfairly spun-
-interpretations to fit an already distorted positive interpretation of the results.
Professor Vincent Racaniello from Columbia University stated that;
“This is a flawed study, it has to be fixed, and people are being harmed by it”.
the Journal of Health Psychology-
-published a special edition on the PACE trial.
The Editors stated that the data were; “unreliable at best, manipulated at worst.”
Confronted with the criticism, lead investigator of the PACE trial Peter White stated;
“I have concluded that it would not be worthwhile of having a conversation.”
"We think our work speaks for itself”.
It truly does, doesn’t it?
Psychiatrist and senior advisor to the investigators, Simon Wessley,
is one of those who developed the CBT that was studied.
Psychiatrist Michael Sharpe was another PACE investigator.
They became interested in ME in the 1980s.
Wessley, Sharpe and White played an important role in the re-definition of ME,
through the development of new diagnostic criteria,
-that didn't exclude psychological causes (Oxford criteria).
The result has been a large overdiagnosis.
These people’s close connections to the insurance industry-
have repeatedly been an issue in the House of Commons.
It was finally declared that lead investigator Peter White was a consultant-
-for the Department for Work and Pensions,
a department that contributed to fund the study,
and had an interest in reducing benfits to ME patients.
He was also linked to the insurance company Swiss Re.
Less than a year after the trial was published,
Swiss Re released this article after a meeting with White.
The insurance company argued that they could refuse insurance pay-
-depending on conditions in the policy,
as ME could be viewed as psychological.
The article was later removed.
Wessely has described the PACE trial as a “thing of beauty”,
and stated that “ME is simply a belief, the belief that one has an illness called ME.”
To Scandinavia’s largest health site,
he has stated that ME patients “are sick, but they have no disease”.
Wessely has contributed to UK health authorities’ treatment guidelines.
Despite that e.g. the Countess Margaret of Mar-
-has warned against Wessley in the Parliament,
and stated that he ignores biomedical evidence for ME, since it does not fit his psychiatric model.
The Countess pointed out Wessely’s undeclared conflicts of interests,
and she raised several of Wessley’s statements,
like ME patients are “a cult recruited from the environmental subculture”,
that ME is a “myth”, the “muscle weakness is simulated”,
and the disease is “all in the mind”.
In 2011, Wessely stated that he faced death threats and abuse from militant patients,
and that he felt safer in Iraq/Afghanistan.
Again, the victim role is sought to gain sympathy.
Later that year, he stated that, with threats as a backdrop,
he gave up active research on ME 10 years ago.
Gave up 10 years ago?
During this 10 year period,
he has contributed to no less than 43 publications on ME (PubMed).
So what have British authorities done?
In 2012, they ennobled him.
Hence, he is now Sir Simon Wessely,
which says a lot about these people’s influence.
In 2020, his wife Dr. Clare Gerada was ennobled.
In this instruction video, she teaches doctors-
-to pressure ME patients to ignore symptoms with gradual exercise.
Michael Sharpe, PACE co-investigator,
originally stated to that he had no conflicts of interests.
When the PACE trial was published,
Sharpe was suddenly listed with conflicts of interests,
including ties to insurance companies.
In a report for the insurance company UNUM Provident,
Sharpe stated that the majority of ME patients-
will meet the criteria for depressive or anxiety disorders,
and that most of the rest meet the criteria-
-for other somatoform disorders (hypochondriasis).
He also stated that state benefits, insurance payments and litigation-
-remain potentially major obstacles to rehabilitation.
Wessely has stated the same about thorough medical examination of ME patients,
as this may reinforce maladaptive behavior.
Sharpe, Wesley, White and others succeeded in conveying-
-that nothing is physically wrong with ME patients.
More than 10.000 patients and other affected have now signed in support-
-of an ongoing process to investigate the PACE investigators.
The PACE trial and its consequences,
are perhaps best summarized by MP Carol Monaghan and Steve Pound:
Click to expand...

Sly Saint · Mar 30, 2021

2nd bit on Wyller etc and counter arguments (pt1)

The Norwegian "expertise"
"Gradual exercise is what it takes to recover, although it may intially hurt" - Prof Vegard Bruun Wyller
One of the influential voices promoting psychological theories for ME,
is Chief Physician and Chief Researcher Vegard Bruun Wyller at Ahus Hospital.
His theory explains sustained arousal or stress response as the cause of ME,
which could be treated with GET and CBT.
The media promotes Mr. Wyller as an ME expert,
due to his many years’ experience researching young patients.
However, what all these patients truly suffer from remains unclear,
as in many of his studies, the only inclusion criteria has been some months of unexplainable fatigue.
Fatigue lasting more than three or six months could be anything.
This is underscored by a Norwegian study, which found than 13 per cent of the patients-
-referred to examination due to fatigue actually had ME.
Almost half had psychological illness, which is to be excluded-
-according to the ME guidelines from The Norwegian Directorate of Health.
In 2015, American Health Authorities concluded that the Oxford Diagnostic Criteria,
which require fatigue only, can harm patients, and they were recommended dismissed.
According to Professor Sommerfelt (MD) at Haukeland University Hospital,
with long experience on ME,
it is important to follow the strictest criteria-
to minimize the chance of researching different illnesses.
In other words, don’t screen patients this way;
Mr. Wyller claims the existence of a specific ME personality.
In 2008, he stated that “dutiful and perfectionist personalities are most exposed”.
The same year, he said that being conscientious and perfectionistic probably constitutes a risk.
To BT in 2010, he stated that “personality plays a role”.
This is like travelling back in time.
As seen here, in “Journal of Chronic Diseases” in 1964,
where rheumatism was said to affect people that are-
-self-sacrificing, shy, perfectionistic and interested in sports and games.
In 1958, scientists underlined the importance of emotional factors-
-and personality characteristics in the pre-set and development of MS.
And as late as in the 1970s,
it was claimed that asthma was a result of predisposed personality structures,
due to parents’ overprotection.
I know of only one systematic review that partly involves this.
It shows no proof that psychological factors are linked to ME.
In 2019, Wyller himself published a study investigating-
-risk factors for developing fatigue following mononucleosis.
The patients were already diagnosed with mononucleosis,
and after 6 months 91 were categorized as fatigued.
Only 20 patients met the strict Canadian criteria for a ME-diagnosis.
The researchers found a correlation with e.g. anxiety.
Still, the study underlined that the factors explored-
-only explained 1/3 of the variation in fatigue after 6 months,
and therefore called for cautious interpretations of the results.
The study also emphasized that statistically,
one could not see the same correaltions regarding ME.
This did not stop Wyller from stating to Aftenposten-
-that their study had proved that ME also results from psychiatric causes.
It should be mentioned that the so-called Dubbo study from Australia,
with similar study design. found the opposite;
that psychological factors were not predictive of ME.
Nontheless, a central element is that Wyller’s study-
-does not show the causality.
The researchers interpreted the correlation-
-as anxiety resulting in fatigue.
Just as likely is that those hit the hardest by mononucleosis,
experienced more anxiety.
To avoid such issue, investigations have to follow people-
-before the onset of mononucleosis.
This was done in a new American study-
-which followed 4500 healthy American college students.
The findings show that some immunological factors-
are predictors of developing ME following mononucleosis,
while psychological factors are not.
In 2020, Wyller stated to VG that the feeling of fatigue-
-results from the brain’s misconception of the body as ill.
In 2019, Mr. Wyller stated the same to Forskning.no,
and added that that functional changes in the brain are a key factor,
and that psychological processes are involved.
Professor Sommerfelt, however, emphasized that no solid research supports Mr. Wyller’s claim,
- and that a negative study from Wyller himself speaks against his own theory.
Mr. Wyller also pointed to the role of lifestyle as a cause for several patients,
and he also stated that access to change the brain-
“is perhaps just as effective with talk therapy as with medications”.
Since research now shows that ME patients suffer from biochemical-
and molecular dysfunction in the cells,
with significant metabolic deviations,
and research suggests that ME patients’ blood-
-contains destructive factors,
Does Mr. Wyller believe that this can be treated with talk therapy?
If so, why don’t we just prescribe that-
-for all blood-, cell- or metabolic illnesses?
It is like Mr. Wyller does not absorb reality,
when he, regarding his negative study,
concluded to Forskning.no that;
“there is no direct correlation between the stress response and the patients’ symptoms”.
For a long time, Wyller has claimed that-
-mental techniques are beneficial for many patients.
Here from 2019.
It makes you wonder how «many» is defined,
as professor Sommerfelt the same year underlined that there is lack of evidence for Wyller's view,
and that CBT does not help many ME patients.
Repeating a message does not make it any more true.
Right or wrong, CBT and ME have in Norway-
been linked to Lighting Process (LP).
Wyller states to Medicine Today that LP and CBT are variants of the same.
LP is a course where you are told that your mindset makes you sick.
The patients must ignore symptoms,
which could be very dangerous,
and you're told it's up to one self to recover.
As former head of the ME Center at Oslo University Hospital,
Barbara Baumgarten, has stated;
those who worsen from LP, experience prolonged worsening.
In 2011, NRK published an article describing an ME sick child-
-who attempted suicide after LP participation, recommended by Wyller.
The boy’s father explained that guilt for not recovering-
- was behind the attempt.
Wyller didn't want to comment on individual cases.
To be clear, I do not direct personal responsibility in this case,
I refer to a published article covering an important topic,
which is underlined when the ASG of the ME Association has said-
- that they are familiar with patients who have committed suicide after LP.
In light of this, it is surrealistic to continue to claim-
-that the risk for damage is low.
It is no less surrealistic when Wyller in 2020 stated to VG,
with regards to a physiological treatment,
that “there are far too many examples of experimental treatment of ME patients,-
-that later have showed no positive effect”.
In 2011, he stated that this was precisely what he had done himself,
when he said that he, with regards to LP,
“could see concerns with sending children to treatment which is not proven”.
As late as in 2019, he also wrote that the scientific aspect of LP remains uncertain.
He also wrote that “LP is often rejected based on the course instructors’ earnings,-
-but this is no scientific rejection of the course.-
-All pharmaceuticals are also linked to commercial interests”.
Firstly, let’s have a look at who is criticizing the commercial aspect of LP.
It is no other than BW himself,
stating in 2011 that he sees potential-
”concerns with treatments with commercial interests like this course”.
Secondly, the main criticism against LP is the harm it may cause,
which make the related profit unacceptable.
But since compares it to Big Pharma;
pharmaceuticals must generally pass various phases and placebo controlled trials,
where effects and side effects are examined on lots of patients.
Wyller also claims that GET is effective and beneficial for ME patients.
Let's have a look.
A Dutch review of 22 studies and surveys shows that GET can cause detrimental effects.
A Belgian report examining 700 patients, shows that CBT/GET-
reduced work participation and increased sickness allowance.
No patients recovered, and physical capacity (VO2) showed no improvement.
Other CBT/GET reviews show the potential harm.
I remind you of the PACE trial,
which showed objective worsening after CBT/GET.
The Norwegian ME Association´s report from 2012,
shows that 66% worsened from GET,
and that this is among the worst things you can do.
The British ME Association´s report in 2015,
uncovered that 74% worsened from GET.
In this report from the Dutch ME Association in 2019,
nearly half of those who had tried CBT,
and two third of those trying both CBT and GET, worsened.
This 2019 meta-analysis of 17.000 patients,
shows great worsening from GET for 54%-74%.
A 2019 survey of 2000 patients on behalf of British health authorities,
found that nearly 70% got worse from GET.
Combined with CBT the results were even worse.
The report concluded that GET and CBT are unsuitable treatments for ME,
and that while CBT may help a minority as a coping strategy,
it was damaging to nearly half.
Particularly GET causes considerable damage.
There are also many studies that show abnormal deviations for ME patients-
compared to healthy people during and after physical activity.
When exposed to the same relative intensity, examples of abnormalities include:
abnormal low intra-cellular ATP/energy,
increased intramuscular acidosis and reduced recovery from acidosis,
reaching anaerobic level faster in terms of oxygen consumption,
reduced VO(2) peak,
abnormal increase in acidosis/endured period of recovery - after repeated activity
Almost every disease is improved by exercise.
Then, we have ME patients who repeatedly say that they get worse.
We're testing patients two days in a row,
so we can examine the lactic acid build up on day two.
Healthy people perform better on the second day.
They improve their performance without building up more lactid acid.
But ME patients have the complete opposite response.
ME is an unusual disease.
Many people think that fatigue and ME is the same thing, but it's not.
This shows that ME patients get worse from exertion.
As objective measures find that they are able to to endure less the second time.
The opposite of healthy people.
It has also been showed that ME patients have reduced-
-maximum heart rate during exercise tests.
So called chronotopic intolerance.
This study analyzing 36 other studies found that while healthy controls-
-reached 36% of expected maximum pulse, ME patients reached 82%.
The researchers concluded that this means that ME patients have 11 fewer beats per minute,
equaling 11 fewer opportunities of pumping blood through the muscles.
Adding another test the next day, the researchers found that-
-that the maximum heart rate of ME patients fell compared to test 1.
For healthy controls it remained the same or increased.
Another objective measure of ME patients worsening from physical activity.
This study from 2017 found that ME patients have-
-opposite neurophysiological changes compared to healthy persons after exertion.
The authors state that this is objective proof for the patients’ cognitive challenges.
A study from 2020 shows similar findings
Research has shown that ME patients experience-
-reduced blood flow to the brain during exercise.
This study shows that with a tilt-up-test,
ME patients’ blood flow to the brain is reduced with 26%.
Perhaps not wise to exercise upright then!
Many other studies show abnormal objective findings, but you get the point.
Research also shows that the metabolism in ME patients’ cells is dysregulated.
This new study indicates that ME patients’ muscle cells are unable to use glucose-
-to produce energy in the same way as healthy cells do.
The ME research group at Oxford states that it is entirely inappropriate-
-to prescribe an intervention when at best only 5% achieve a major improvement,
and nearly 50% a major deterioration,
and that a medication with similar effects would be revoked.
As this publication from 2019 shows,
there is no system to report damage from CBT/GET as with drugs,
Hence, such harmful medical advice is allowed to continue.
In their new 2013 guidelines,
The Directorate recommended that severely ill ME patients-
to a larger extent should be shielded.
Wyller reacted, and expressed that these recommendations-
were both “wrong and dangerous”.
This made severe ME patient Bjornar react:
When a so called expert says something like that,
it shows that he hasn't got a clue.
It must not happen.
Severely ill ME patients must be shielded.
The consequences of having severely ill doing activity will be detrimental.
It will cost ME patients their lives.
Or cause so much damage that they don't want to live anymore.
I have layed like this for approximately 10 years now.
I lay completely still on my back, day in day out.
In the same article, Wyller stated that “there is a fine balance between-
-experts’ knowledge and patients’ perception of the disease.-
-But a cancer patient doesn't lecture the experts about the cause.”
Click to expand...

Sly Saint · Mar 30, 2021

pt2 of above

So let’s have a look at what the experts actually say.

Institute of Medicine assembled in 2015 a panel of 15 experts.

After evaluating more than 9000 scientific reports,

they concluded that ME is a serious, physiological, chronic, multisystemic disease.

And that the perception of ME as psychosomatic must end.

They also concluded that a core symptom and a primary feature to distinguish ME from other conditions,

is that the ME patients have a measurable physiological reaction to exertion,

as shown in previous studies.

This is called PEM, Post-Exertional Malaise.

The Norwegian guidelines concludes that this is a cardinal symptom.

NIH's Director for Neurological Disorders states that this is unique to ME.

Yet, it is not even a criteria in many of Wyller’s own studies,

or other he refers to.

By simulating PEM, new research has uncovered 11 micro RNAs-

-separating ME patients from healthy controls with 90% accuracy.

Changes in micro RNAs could indicate damaged cells,

and the finding also suggest classification of patients based on severity.

Ron Davis at Stanford University ,

one of the world’s most renowned genetic scientists,

who in the Atlantic was listed as one of today's greatest inventors,

alongside Elon Musk and Jeff Bezoz,

and who now researches ME, explained it this way;

Wyller illustrated his conflation of ME and other conditions, when he, in 2015,

answered this regarding CBT as treatment for ME:

“in a cognitive setting, you can ask the patient-

-if they think they’ll be tired of certain activities,-

-or if they think they can try some activities within certain limits.-

-Maybe the patient can experience some activities that create energy,-

-Some patients I’ve had have experienced this with dancing.-

Then you suggest that they start slow,-

-and build themselves up on those positive experiences”

ME patients cannot experience such energy creating activities,

as the definition of the disease and its cardinal characteristic-

is a worsened condition after exertion.

Wyller criticizes ME-scientists who warn against CBT,

as this treatment, based on the scandalous PACE trial,

has the “best scientific documentation”.

The latest systematic review on controlled studies for ME-

-underlines that newer CBT studies fail to show consistent benefits,

since 5/7 studies did not show significant effects.

In 2020, Wyller stated to VG that the risk of side effects from CBT and GET-

-“are few and can be recommended to all ME patients”,

and that “GET is what it takes to recover, although it may initially hurt”.

As just shown, this is incorrect.

Such advice could be very dangerous,

and one by one, national health authorities are abandoning them.

American health authorities have removed recommendations of GET/CBT.

Dutch and Belgian authorities have contracted recommendations of GET,

and Belgian authorities have also removed CBT as a standard treatment.

In 2019, the British parliament voted to suspend GET/CBT for ME.

In 2020, British health authorities suggested to advice against any form of-

-GET for ME patients, and treating ME with CBT.

The draft is under consultation.

The recommendations from UK health authorities-

-could not have been more clear;

“Do not offer people with ME/CFS any therapy-

-based on physical activity or exercise as a treatment or cure for ME”

or “generalized physical activity or exercise programs”.

Furthermore; “there is no therapy based on physical activity or exercise-

-that is effective as a treatment or cure for ME/CFS”.

And, ”Do not offer CBT as a treatment or cure for ME/CFS”.

In addition, they underlined the importance of-

-not pushing yourself beyond your limited capacity.

As part of this thorough assessment,

the quality of GET/CBT studies was evaluated.

Across 172 outcomes on CBT,

89% were found to be “very low” quality.

The remaining 11% were deemed “low” quality.

Not a single study produced evidence any better than “low” quality.

Studies Wyller refers to as scientifically good studies.

The results were the same for GET.

Across 64 outcomes, 81% were graded “very low” quality and 19% "low quality".

Not a single study produced evidence any better than “low” quality.

As this British survey of the most severe ME patients found,

they believed GET and over activity was one of the main reasons-

-for them being severely affected.

This is further supported by this 2019 survey on behalf of UK authorities,

which showed that the proportion severely ill ME patients-

- increased from 13 to 35% after GET.

The corresponding number for CBT showed an increase from 11% to 19%.

This person tells how GET made her/him bedridden 23 hours a day.

Or this person, who went from being mildly affected to severe, due to GET.

Another patient tells that pushing herself through the pain almost killed her,

as she ended up with a heart attack.

As part of the process in which British authorities-

-suggested against advising GET/CBT as treatments,

over thousand stories of patients experiencing harm-

-from these treatments were sent in:

Who’s actually attacking whom?

When professor, doctor and scientist Ola Didrik Saugstad at Oslo University Hospital-

-pointed out that the release of the PACE data showed that CBT was ineffective,

and that research uncovered that-

-ME patients’ likely have brain inflammation,

Wyller again showed up,

and implied that professor Saugstad is biased-

-as a parent to an ME patient.

What!?

According to the logic of Wyller,

all cancer scientists with a family member-

-suffering from cancer is biased.

Wyller has stated that he welcomes everyone-

-who constructively engage with the ME matter.

Constructive engagement apparently means agreeing with Wyller

The consequences of Wyller’s attack on professor Saugstad,

is visible when The Insurance Court applied the same argument-

-to reject an ME patient’s application for disability benefits.

They statet that Saugstad’s article should not be given weight,

since he is next of kin to a ME patient.

Do you think the Court would say the same about cancer scientists?

Dr. Saugstad also pointed out American authorities’ biomedical conclusions,

and that fatigue, pain and tinnitus is not the same as ME.

Wyller compared Dr. Saugstad’s points with those claiming that the sun orbits the earth.

Wyller’s statement lead professor in forensic medicine, Torleiv Rognum,

to suggest that Wyller must be quite desperate with such arguments.

Rognum considered it to be borderline defamation,

and that it is Wyller who ignores all principles of objectivity.

As Saugstad himself has stated:

"biomedical research has gathered momentum,-

and many findings threaten the psychosomatic position of Wyller’s career”.

With so much own prestige at stake,

it's remarkable to wrongfully imply the partiality of others.

Wyller claims that he has the most ME research experience in Norway.

Such apparent credibility serves as the base for receiving millions in funding,

like for his study on musical therapy for ME, published in 2020.

It involved listening to music, improvisation,

song writing and learning to play an instrument,

as well as homework and personal playlists.

The study is a story of its own.

The project protocol states it was studying ME,

while the publication talks about fatigue.

Only 14% of the patients in the treatment group had ME according to strict criteria.

Less than half of the 91 patients chose to participate,

divided into treatment & control group.

Almost 40% of the treatment group withdrew along the way.

Hence, it's not a representative selection.

The study protocol defined one primary endpoint;

the objective measure of number of steps.

When this endpoint showed worsening, also compared to the control group,

the focus was changed to two secondary endpoints,

which apparently was added along the way,

as they were not included in the original endpoints;

Recovery and PEM.

The study defined recovery as subjective improvement of fatigue,

which are far from the same.

For this endpoint, the researchers simply took the numbers for fatigue,

excluded those who withdrew,

and called this recovery.

Including these patients, the deviation to the control group would have been minimal,

The study also used an unprecise definition of PEM.

Patients were asked how often they experienced more fatigue after exertion.

When patients reduced their activity,

shown by fewer steps,

they would probably experience fewer episodes of increased fatigue after activity.

The deviations compared to the control group were minimal.

The scientists allowed one recovered patient to share the success with the participants,

which is ethically questionable, since it may cause placebo effects,

especially with subjective questionnaires.

The scientists themselves underlined that the aim of this-

-was to connect the patients to the treatment rationale.

Wyller and his fellow scientists concluded that the treatment-

-tended to show positive effects,

and based themselves on dubious endpoints that were added along the way,

where they ignored patients who withdrew,

while claimed that one endpoint (PEM),

which probably was reduced since the patients’ condition worsened,

showed that the patients’ improved.

The fact that the most important endpoint in every study,

the primary endpoint, showed worsening,

appeared to be less important,

and was excluded in the definition of recovery.

To Forskning.no, Wyller tried to justify the worsening of patients’ activity levels-

-by saying that they learned to rest more.

A study is expected to maintain its’ own defined endpoints.

This is essential to avoid that the scientists pick those endpoints with the best results.

Confronted with the criticism,

Wyller claimed to be the target of a smear campaign and activism.

Wyller also wrote that the study was a feasibility study-

(a preliminary study looking for tendencies only)-

and that the goal never was to say anything specific about the effects.

This is in sharp contrast to the study’s own protocols,

which clearly stated that the goal was to study the effect,

and achieve great effects in terms of the primary endpoint.

It was not mentioned anywhere in protocol that this was a feasibility study.

As David Tuller, DrPH and senior fellow in public health at Berkely University, stated;

everything indicated that this was a randomized trial that might inform clinical practice,

but that the authors re-wrote history after patient recruitment and results fell below expectations.

Wyller’s own 2015 statements related to a study he was not involved in,

sums it up quite well:

“On the predefined endpoint,-

-the one you decide in advance that will measure the effect,-

-it showed no effect.-

-In all other circumstances, this would be regarded as a negative study”.

By “all other circumstances”,

Wyller apparently means those he himself is not a part of.

The study was retracted and had to be re-published,

since it originally was a fully powered trial,

and not a feasibility study which they presented it to be.

Apparently, there was no smear campaign after all.

BMJ who published the study,

tried to explain away the failure of calling it a feasibility study-

-as an error on their part, and not on behalf of the authors.

Well, the original study had two peer-reviewers.

One only read the abstract,

the other questioned whether this was a feasibility study or fully powered trial.

As Wyller before, the scientists yet again claimed it was a feasibility study.

BMJ’s portrayal of the scientists own claims as an internal error-

-comes off as an attempt to hide their actions.

Which is further enhanced, when BMJ has decided,

in breech with their policy,

to not publish the peer review history.

In the new version, which is presented as a new study,

the problematic history is hidden away in a footnote,

and even worse results were presented.

The objective primary endpoint showed an even greater-

-negative absolute and relative effect against the control group.

Remarkably, the numbers of steps in the treatment group-

was now reduced with 21%.

Compared to the first version where positive effects were claimed,

this new version emphasized that the treatment did not have-

-significant effects on primary/secondary endpoints.

Generally, I welcome all research on ME.

Yet, as resources are strained,

it is wrong to continue to prioritize research on disproved theories.

Wyller is no where to be seen at the large biomedical conferences on ME.

This reminds me of how the scholars who wrongfully claimed-

-that the sun orbits the earth,

refused to look into Galileo Galilei’s telescope,
afraid of what they might see.
Click to expand...

Sly Saint · Mar 30, 2021

3rd bit on LP, Crawley,Live Landmark pt1

"You don't have ME, you do ME" - mantra on LP course
Lightning Process (LP) teach you cognitive techniques to recover.
It's based on neuro linguistic programming,
and was developed by Phil Parker, a former healer and medical clairvoyant
who trained others in how to diagnose peoples’ ailments-
-through aura, tarot, energy paths, “spinning of pendulums”-
and communication with spiritual helpers.
This is accessible via Phil Parkers’ old website via Wayback Machine.
LP is trademarked and can only be carried out by certified instructors.
The course lasts for 3 days and costs appr. $2.000 in Norway.
A royalty is paid to Phil Parker.
he course teaches you to replace bad thoughts with good ones.
You counter your symptoms by stretching out your arms and say STOP.
The process can be illustrated like this,
and is repeated until the disease disappears.
You're told that it's up to you to recover,
and the disease is reduced to a question of willpower.
"You don’t have ME, you do ME".
For further insight, see this Facebook-post from a patient-
-where he describes the course in detail.
CBT could cause great harm for ME patients.
Many also get worse from LP.
A fact known by the authorities.
In 2011, The National Research Center for alternative medicine (NAFKAM),
sent a message of concern to the authorities.
In 2012, The ME Association reported that out of the patients who had tried LP,
49 % got worse.
8 out of 10 worsened or had no effect.
The report showed that LP is among the worst things you could do.
In 2014, 35 patients with a negative LP experience-
-sent a message of concern to the health authorities.
In 2015, NAFKAM reported that there is no solid scientific basis for the claim that LP works.
In 2020, they maintained that LP is associated with risk.
Phil Parker, the founder, has been required to remove-
-undocumented and misleading health claims in his marketing,
like the course’s ability to treat MS.
No Norwegian physicians recommend LP to MS patients,
which in turn says a lot about physicians’ view on ME.
A view that is reinforced when Parker have claimed-
-that nearly 90% of ME patients recover from LP.
In 2020, British health authorities advised against LP for ME patients (proposal on hearing).
LP has made it hard for negative experiences to emerge.
Patients are interviewed in advance.
They have had to accept that they will not criticize the content-
-or discuss it with the outside world,
as this may negate the healing effect.
In order to get well, you have to tell yourself and others that you feel fine.
This is in turn used as evidence for the course’s effect,
misleading the public and authorities regarding the effects.
One example is in the magazine “Physiotherapy in private practice” from 2009,
which covered a survey conducted by Norwegian LP instructors/course licensees.
The survey reported that 15 weeks after course participation,
97% of patients reported improved quality of life,
with an average rise from 3 to 8 on a scale from 1-10.
This is sensational, as the general population average is 5.5
The findings were presented to Norwegian health authorities.
The LP course recruits patients with all types of fatigue.
For some the course works, which is great.
The problem is those benefiting who are deemed to suffer from ME,
in reality may suffer from something else.
This does not exclude that some ME patients have benefited from LP.
But this is a minority,
and many get worse.
Still, the marketing towards these patients continues.
Some people’s LP-recovery is used as evidence for ME patients in general.
As a former psychologist wrote that her physiotherapist concluded;
”when people recover after a three-day course, ME is psychologically in nature”.
Many are scared to share their negative experience in fear of negative attention,
and that it may be used against them by doctors, the welfare system etc.,
who believe that recovery depends on motivation.
Some patients have become too ill to tell.
Still many share their experience.
Kristine tells that you were not allowed to question anything.
She was reprimanded when she almost fainted and had to throw up.
She “was negative and ruined for the others”.
She was told to say ”stop“ and not throw up.
She had to sign that she did not do ME anymore,
and was pushed to rate her symptoms more favorably.
Kristine ignored her symptoms as told.
This led to her being bedridden
She felt ashamed, as it was her own fault if she did not recover.
She felt so dispaired that she wanted to take her own life.
It led to permanent damage.
Lisbeth describes the course as a religious ceremony.
She experienced a total collapse, and became sicker than ever.
Maria describes how she collapsed after the course.
She had to move home to her parents
Torbjørg says she was brainwashed, she was the one who had “done ME”.
She had a total collapse, and must now use wheel chair.
Trude describes the course as almost sectarian,
and got worse than ever.
Venke also worsened.
Sadly, a participant on her course got life threatening ill.
Another severely ill patient wishes she had never participated at LP as a 19 year old.
It caused prolonged damage.
They told her that LP could cure cancer.
Stories like these show why a psychologist has compared LP-
-to 1970’s Christian revival meetings aiming to cure gays;
- The suggestive techniques, media coverage and warnings against listening to others.
As well as in how unethical methods can get a foothold.
Live Landmark is the person behind LP in Norway, earning millions.
She has taken a very active public role,
and speaks about her own ME-recovery after LP participation.
Shortly after, she became an LP instructor.
In this article, she stated that it’s about having ME patients leaving the victim role,
and that “the vast majority fully recover during the course”.
Despite all the stories on how LP has harmed many ME patients,
Landmark continues to claim the opposite.
Like here, when she in an 2018 op-ed-
-claimed there are just a few people that don’t have effect,
and that their stress and disappointments-
-must not prevent the majority’s chances for recovery.
As ME-scientist Professor Olav Mella, stated in 2017;
“Among those who meet the critical criteria for a ME diagnosis,-
-we believe most will have a biomedical disease”
“A psychological approach may, however,-
-be beneficial for those with other variants of fatigue”.
This is very important.
Patients with other fatigue conditions-
cannot set the standard for an ME disease they don’t have.
The same applies to the minority who falls within a ME diagnosis,
yet are able to recover through GET/CBT.
Do I know exactly what criteria and treatments will look like in the future,
and who will recover from what?
No!
And it may be different phases,
where different interventions work at different stages.
But it’s important that the diagnosis is set by experienced experts,
as todays’ criteria not always will be sufficient.
To get an ME diagnosis from recognized diagnostic criteria,
a psychological cause has to be excluded.
Unfortunately, many doctors fail to do this.
TV2 published an article in which a GP warned against LP.
He asked how the authorities can let this happen,
and called it grave economic exploitation of sick people.
He believed that those improving from LP have some other form of fatigue.
Despite the doctor’s negative experiences,
and the fact that Landmark year after year is confronted with such stories,
she told TV2 that she knew no one who got worse from LP.
Her focus appeared to be that;
“10 out of 12 course participants were completely back to their lives”.
Landmark also seemed to have forgotten that-
-a 13 year old had tried to end his life after LP.
According to the father,
they were told that it was your own fault if you did not recover.
The boy collapsed after two weeks.
He was unable to recover and full of guilt.
The father called the course instructor and told what had happened.
He asked them to stop offering this course to ME patients, especially children.
The course instructor’s answer was to offer a new course - for free.
In 2018, Landmark wrote about ME patients that-
-“not everyone is able to take responsibility for their own health”.
She also wrote that some of those struggling with LP scores high on neuroticism.
In her book, she compares a relapse after LP to;
“being on a strict diet to lose weight, and not follow the diet.-
-Then it is easy to feel like a failure”.
This is victim blaming and discredits patient’s negative experiences.
Landmark labels objective scientific criticism as “activism”,
In this post, she described patients as “activists who sharpens their knives”,
pointing to “harassment with the force of a hurricane”,
and that “doctors and health personnel who don’t share the activists’ view are intimidated”.
In Aftenposten, she compared those opposing her view to-
-“international movements whose truth is reflective of sectarian beliefs”-
-and “vaccine opponents”.
When former parliament member Laila Dåvøy criticized psychologically based involuntary-
-hospital admission of ME patients,
Landmark asked; "how dare you call it a tragedy when the patients get help?”
Who is attacking who?
A young boy wrote in Aftenposten how the Child Welfare Authorities got involved,
since both he and his brother had ME.
He had not attended school for years,
and his mother was accused of being overprotective.
Landmark tweeted; “poor, poor little fellow, where are the parents?”
This was despite that the boy wrote that he had tried LP,
was told that it was his own fault if he didn’t recover,
and underlined that there have been suicides following LP.
Who is attacking who?
The following year, Landmark blamed the mothers,
when she wrote that ME children could recover if their parents-
-“change their focus from their child’s symptoms to their own fear and despair”.
A former psychologist wrote that this reminded her-
-of the stigma mothers of autistic children faced in the 1980s,
when it was indicated that these mothers didn’t provide warmness in their care.
The well-known radio personality Lise Askvik-
-commented that it was unbelievable-
-how Landmark could step on a patient group in this way,
and asked if Landmark wanted to help patients,
or just get rich from LP?
Landmark has in-depth knowledge of media,
and a network in an industry that provides her course free PR.
She is a journalist, author, and lecturer.
Former blogger for The Journal of the Norwegian Medical Association.
Written more than 40 op-eds about ME in both medical publications-
-and Norway’s largest news outlets.
She is interviewed by the national media,
and is active on her own website, Twitter and Facebook,
where she reaches her 4.500 friends,
including well-known editors and journalists,
Norway’s Director of Health and Health Minister,
the director of The Norwegian Institute of Public Health,
the President of the Parliament,
the Auditor General,
other current and former ministers,
several other politicians,
as well as influential people within health,
law and order,
business,
PR and communication,
culture,
as well as the Royal Family.
Hence, Landmark has established herself as an expert-
-on such a devastating biomedical disease.
In 2017, she stated that she was contacted-
-to be an expert in a documentary on ME.
A lot could be said about the “science” the LP supporters refer to..
In 2014, Landmark wrote that “we are not deceived by the number of supporters,-
-but base ourselves on research.”
The first was a user survey from 2008 among all LP participants,
regardless of their condition.
Six months later, she wrote in Medicine Today that-
-the data from this survey were collected externally.
Her own presentation of the results,
shows that it was her own company “Aktiv Prosess” that collected the data.
The company behind LP in Norway.
At that time, the company had two employees including her.
Landmark also referred to a study from 2012.
Although the study was published in a UK psychology journal,
two of the investigators were British and one was Norwegian,
and the patients were recruited in the UK,
NRK Nightly News presented the study as a Harvard study:
“A Harvard study that was published today look, for the first time,-
-at the use of therapy to heal ME patients."
The link to Harvard was that one of the investigators was a post-doc there.
The patients were recruited from an internet advertisement after LP-participation,
and chosen based on “opportunistic sampling”.
The objective was not to measure effect,
but through telephone interviews get their experiences.
Landmark wrote in Medicine Today that 7 of 9 adolescents with a ME diagnosis-
-told that they felt better or had fully recovered after LP.
The criteria applied only demanded fatigue for a period of time,
during which it was present for more than 50% of the time.
Landmark also gives the impression that-
-this was a study measuring LP’s effect.
This was a survey where 7 out of 9 who chose-
-to participate reported an effect.
So when NRK stated that the study-
-measured LP’s effect on ME patients,
that was exactly what it didn’t do.
Landmark promoted the study to the now Norwegian PM,
who responded.
In Medicine Today, Landmark marginalized those not improving,
stating that one participant worsened due to being disappointed.
She failed to mention that those without positive outcome-
-reacted to course methods of blame and dishonesty.
The last study Landmark referred to-
-was published in the nurse publication Sykepleien.
This was also survey based,
with the objective of obtaining experiences-
-from patients who had already completed the LP-course.
The effect was not measured,
and participants were recruited from e.g. an online forum.
The study highlighted how some participants-
-had become bedridden after LP.
Later, a new larger study on ME and LP has been published in the UK.
A study Landmark has described as the gold standard of research.
So feel free to judge for yourself.
The lead investigator, Esther Crawley at Bristol University,
got the second most funding for ME research in UK from 2006-2016.
Crawly too, portrays objective, scientific criticism as harassment.
Like during this 2017 lecture,
where she claimed that request for data is evil tactics,
tactics also performed by fake people.
She referred to ME children as poor and criminal, with substance abuse.
It turned out that also Crawley’s SMILE study on LP,
failed to comply with scientific standards.
As with the PACE trial, she changed the criteria along the way.
With the original primary endpoint,
children’s’ school participation 6months,
the study would have shown no significant effect.
After having seen the data for a large part of the patients,
she changed the primary endpoint to the-
-subjective endpoint of self-reported physical functioning.
Classic outcome switching.
All this was omitted when the study was published.
Met with heavy criticism,
the investigators argued in a correction that pupils transitioning-
-to A levels made school participation an inaccurate endpoint.
A premise known before the study started,
which could have easily been taken into account
The use of wide diagnostic criteria,
makes it impossible to tell how many actually had ME.
The sickest patients were excluded.
And less than one third of the qualified patients chose to participate.
Only 13% of those qualified ended up completing the LP course.
In other words: the patient selection was not representative for ME.
In 2019, a correction was added to the study,
admitting significant faults and errors.
Later that year, more than 70 scientist, professors, physicians etc. from universities like-
-Columbia, Stanford, Harvard, Melbourne, Wellington and Berkeley,
sent a letter to the editor of the publishing journal,
expressing dismay of the study’s ethical and methodological lapses.
Professor Edzard Ernst, with over 1000 peer-reviewed publications,
and having been ranked as nr 1 in the work of-
-evaluating the objective proof of alternative medicine,
as well as former Editor-in-Chief of three medical journals,
called LP pure quackery,
and compared the study to giving ice cream to children,
since it e.g. did not control for placebo effect.
There you go, “the gold standard”.
The study has obviously no credibility, when British health authorities-
now advice against Lightning Process for ME patients (proposal out on hearing).
Their review found that the study’s findings were of-
-“low to very low quality”, due to the risk of bias.
For more on this study, see the links in the description.
It is this study Landmark referred to,
when she in 2020 wrote on NRK.no that LP is safe.
Was it safe for all those who got worse?
What about this patient,
who was guided to the course by NAV, and ended up bedridden?
A cognitive behavioural therapist writes how he struggles with guilt-
-after sending his child on a LP course,
which he now considers abuse.
He witnessed the course himself.
Click to expand...

Sly Saint · Mar 30, 2021

pt2

Crawley has boasted about her role in a campaign-

-to discredit patients and scientists who have criticized the research.

Through the organization SMC, which together with the investigators-

-tried to prevent the release of the PACE trial data.

They would use the press to paint a picture that patients harassed them,

and thereby discredit those who uncovered their scientific misconducts.

This campaign was mentioned in the Tribunal's PACE verdict.

Here is some of the coverage resulting from such tactics.

When UK health authorities in 2020 advised against CBT/GET,

the smear campaign organization SMC made a last desperate attempt-

-with a press release containing statements from well-known actors;

Peter White, Michael Sharp, Trudie Chalder-

-and not at least Simon Wessley,

who until recently was a board member of SMC.

In 2014 on NRK.no, Landmark commented on the Directorate of Health’s-

-new guidelines of shielding the most severely ill ME patients;

“bad advice could actually lead to side effects,-

-and such advice must at least prevent further damage”.

Am I the only one seeing the irony?

She wrote that she had contacted the Directorate of Health,

the Institute of Public Health and the Ministry of Health,

to get the guidelines re-evaluated.

She also contacted all 8 physicians in the Directorate’s Medical Council.

This shows how Lobby Live works when she,

as she writes on her own website,

“conducts active lobbying towards governmental authorities”.

LP has very much been a Norwegian ”thing” outside the UK,

but also within the UK.

In 2009, Medicine Today wrote that 40% of all LP participants in UK were Norwegian.

Further statistics were presented by Day and Time in 2012.

At that time, 57 Norwegians had completed an LP-instructor course.

In the rest of Europe, excluding UK and Norway,-

-there were only 6 other instructors.

The sole instructor in both Sweden and the US were both Norwegian.

In 2009, Medicine Today wrote that over the last two years-

-Norwegians had spent USD 4 million on LP.

In 2012, Day and Time estimated the amount to be-

-around USD 8.5 million the last 5 years.

The same year, Finansavisen wrote that Landmark-

-personally had made USD 1.2 million from LP.

In 2009, when asked about the course-fee,

Landmark explained that participants-

-"have a strong motivation to pay, and motivation is an important part of the course”.

Some years later, she stated that-

-“what you pay is indicative of your motivation.-

-If you have bought an expensive phone, you're more willing to take care of it”.

In other words, motivation is a precondition for recovery,

and a high price gives motivation.

When asked about the royalties to the founder Phil Parker,

she stated that “this is a business secret”.

The cost of becoming a LP instructor is no secret.

Phil Parker’s website informs that this costs more than $10.000.

The instructors can reach “advanced status”,

by carrying out a set number of seminars for a set number of participants each year.

Add the high fee to become an instructor, and you get an incentive to recruit participants.

Jørgen Jelstad, author of “The hidden ones”, has emphasized-

-that several of those who have appeared in the media with their LP-recovery,

later have relapsed.

And that the media coverage and Landmark’s networking-

-is a main reason behind LP’s popularity in Norway.

Landmark did not want to comment.

Yet her allie Dr. Wyller stated that;

“LP has had strong spokespersons in Norway, particularly Landmark,

-which has probably meant a lot."

By claiming that LP is not a treatment,

although this is the impression given to recruit new patients,

but rather mental training, like here in Aftenposten,

one apparently tried to avoid being labelled as a treatment,

with the responsibilities that follow.

When favorable, the course is promoted as training,

the next moment as treatment.

Like when Landmark claims at NRK.no that she has-

-clinical experience with the ME patient group,

or implies in The Norwegian Psychologists’ Magazine-

-that her course has therapeutic effect.

And what about her scheduled lecture-

-promoting LP as a treatment for ME?

The so-called Harvard study described LP as treatment.

So does the other study the LP supporters refer to.

So does LP supporter Dr. Wyller.

There is no doubt that LP gives the impression of being a treatment,

when its course leaflet state:

“many of those bedridden achieve almost immediate recovery."

And, “some recovery quickly, others take some weeks or months”.

The same goes when Landmark states that;

“most achieve full recovery during the course"

In July 2017, the Consumer Council updated-

-their guidelines for marketing of alternative therapies.

The new guidelines forbid the promotional use-

-of testimonials from satisfied clients and user surveys.

Landmark removed LP-recovery stories from her website.

The Norwegian Association for LP instructors hired a lawyer-

-to assist them in not being defined as an alternative therapy.

Lobby Live contacted The Directorate of Health to influence the decision.

The Directorate of Health, the Consumer Authority and NAFKAM,

all concluded that LP instructors carry out alternative therapy.

Was this the final straw for such publicity activities?
Click to expand...

Well,
just two weeks later Recovery Norway launched their Facebook page.
Recovery Norway (RN) is an organization for former patients, led by a physician.
A patient organization avoids the regulations for alternative therapies.
Shortly after the launch of RN,
patient recovery stories were published on their website.
This maneuver is unassailable.
As the Consumer Authority stated about RN;
“an utterance from a patient organization is not considered marketing for any alternative therapy”.
Physician Henrik Vogt is the director of RN.
He describes himself as a media doctor,
and has as a former journalist retained frequent media access,
e.g. through his former employer Aftenposten.
This is 2020 only.
Vogt states that those who consider ME as a disease you can’t recover from,
base their view on unfounded theories,
and that he knows his own prestige is at stake.
Just to be clear;
everyone agrees that some people can fully recover.
The nuance is that this cannot be used as proof for the majority.
One by one national health authorities conclude that there is no cure for ME.
E.g. British health authorities
Vogt states that there is no evidence that ME is a HIV-like illness.
Well…
Dr. Derya Unutmaz, HIV scientist and presently in charge-
-of a large project on ME, financed by American authorities,
concludes the opposite.
As he explains to Medscape, the perturbations in the immune data-
-of ME patients are what you normally see in HIV-patients.
As Unutmaz says, the problem for many HIV patients is not the virus in itself,
but the inflammation left over from when it was active.
This is very recognizable in ME.
a virus as an initial trigger,
given that up to 80% of ME patients got ill after an infection,
and the subsequent inflammation.
Nonetheless, ME differs from HIV.
Especially in terms of quality of life.
Professor Mark Loveless states that ME patients feel effectively the same every day-
-as an AIDS patient two months before death, but it’s never ending.
Dr. Nancy Klimas, scientist and HIV/AIDS and ME physician confirms this.
She has also stated that she would rather suffer from HIV than ME,
since HIV patients are mostly hale and hearty,
thanks to decades of funding.
One HIV patient who later got ME,
explains that 99% of HIV patients are healthier than 99% of ME patients.
As an HIV patient, he was a triathlete,
as an ME patient he cannot walk slowly for 10 minutes.
The same picture is drawn by an HIV patient in Huffington Post,
when describing how he takes care of his ME-sick partner;
"I can tell you without hesitation, ME/CFS is much worse than HIV."
In 2019, a potential ME breakthrough received attention.
Scientists at Stanford University had found a possible diagnostic test.
The test shows that the patients’ cells lack energy.
Out of 20 patients and 20 controls, all 40 samples were identified correctly.
This was later repeated with another 20 patients and 20 controls.
Henrik Vogt immediately concluded that the test-
-is unable to separate ME from other conditions.
He tweeted several times to discredit the findings.
Vogt, who has stated that the leader of the science team behind this test,
one of the world’s most renowned genetic scientists,
who has been listed as one of the greatest inventors of our time-
-alongside Elon Musk and Jeff Bezos,
is an activist.
Time will tell if the test is specific to ME.
So far nobody knows.
Not I or the world’s leading scientists,
and most definitely not Henrik Vogt.
Vogt claims that there is no difference between ME and fatigue patients,
that no tool exists to separate these conditions,
and that such claims are quasi-science.
That’s an interesting position.
With strict diagnostic criteria,
around 0,5 -0,8% of the population has ME.
With wide criteria only requiring fatigue,
this figure increases to 5%.
Never mind the Norwegian study showing that-
-just 13% of fatigue patients actually had ME.
Furthermore, the last few years have brought-
-many potential biomarkers for ME.
Here are 7, which so far give between 90-100% accuracy in diagnosing ME patients.
One of them compared ME to both healthy controls as well as MS,
a different condition, showing a clear difference.
It is very important to separate ME from other fatigue conditions-
-affecting many more people. It’s not the same.
A terrible incident occurred in Sweden in 2018,
when a couple chose to end their children’s lives,
before ending their own, since they saw no future for their ill children.
Henrik Vogt blamed patients and scientists who promote that ME is a biomedical disease.
According to him, it’s partly their fault that these children lost their lives.
He concluded that the children could get well.
Accusing patients and leading scientists of being co-responsible of murder is not ok.
Vogt thereby indirectly accuses Nobel Prize winners,
National Academy of Science members,
as well as hundreds of scientists, doctors etc. associated with the research of ME.
Vogt is by the way affiliated with the Centre for Medical Ethics at the University of Oslo.
Two people who liked Vogt’s tweet were-
-Live Landmark and PACE investigator Michael Sharpe.
Landmark also retweeted.
A year later, Landmark highlighted this Swedish tragedy-
-in an Op-ed called "When the doctor makes you sick”.
She failed to mention her conflict of interests,
and signed the article as management consultant.
Even Dagbladet found the article too much, and deleted it.
Dagbladet’s political editor said that Landmark went too far,
and that it was hard to defend the link between-
-the tragedy in Sweden and CBT for ME.
In 2019, lawyer and social security expert Olav Lægreid opposed helsenorge.no,
a governmental platform providing “assured information on health, diseases and rights”.
The content related to ME was delivered by The Directorate of Health,
and linked to Recovery Norway’s website,
an organization that promotes LP,
which Mr. Lægreid compared to magic, shamanism and quackery.
In the same article, Henrik Vogt claimed that-
-Recovery Norway (RN) don't promote LP, but tell stories.
So, according to Vogt, he doesn't promote LP,
when he, below an op-ed on ME and LP by Landmark in 2018,
links to patient stories on RN’s Facebook pages,
and writes that many have recovered thanks to… LP.
Vogt claimed that there is a movement-
-that doesn't want cognitive-based recovery stories to be published,
as it does not fit their narrative,
and that the research RN desire is hindered-
-by established patient organizations that only want biomedical research.
Again; well-known distraction.
When the Directorate chose more strict diagnosis criteria,
which among other things excluded psychological causes,
Vogt’s allied Dr. Mats Reimer claimed that this was a result-
-of patients who do not want ME linked to psychology.
Both Landmark and Wyller have accused the counterpart of an ideological fight.
In 2020, Henrik Vogt stated that much has to do with the fact-
-that psychological disease by many is considered to be of second-class,
and that “the stigma against psychological unwellness is bubbling under the surface”.
Has it occurred to you that patients want ME to be considered-
-a biomedical disease based on recovery, rather than ideology?
And that the patients would have wanted the disease-
-to be curable through psychological therapy,
as that would mean they could recover?
When more than one third say they have tried CBT/GET,
this shows that these patients are willing to try everything,
and that there is no ideology.
Instead, this represents a poor diversion from the fact that many patients-
-get seriously worse from these treatments.
It should be mentioned that many psychologists are critical-
-to the psychologizing of ME, and the affiliated studies.
Following British authorities' proposed advice on removing GET/ CBT for ME,
professor Brian Hughes called it “an utter repudiation”,
and underlined the value that this came from a “thorough empirical review”.
He also stated that the ensuing public shaming-
-of the psychological approaches is long overdue, and richly deserved.
Cognitive therapies comes in many forms, and doesn't need to inflict harm.
It could for example be helpful to learn how to cope with a changed life situation.
It is also important to underline that some of those-
-who have recovered through cognitive techniques have been very ill.
And although their symptoms are physical and concrete,
the solution does not need to be biomedical.
Nor is their condition something they just “make up”,
and they don’t’ just need to “pull themselves together”.
I wish them all the best.
This is not about marginalizing the stories of those benefiting from CBT.
This is not a fight between different patients.
It's wrong if people who could recover-
-from a psychological approach, don’t get this treatment.
This is an important nuance that contrasts-
-the often black and white focus of a broad approach to fatigue.
Which merge different conditions, and hamper the development of biomedical tests.
Which in turn prevents distinct treatments.
It would have been a win-win for all.
So why set people who need different solutions up against each other?
Why make health and illness a continuous fight over the victim role?
Why create unnecessary hostility and frustration,
when everyone should seek the same;
to improve the well-being of others, yourself or your loved ones.
So perhaps ME patients, who with science in hand-
-desperately ask for biomedical help and warn against malpractice,
should not be told, year after year,
that they steal hope and scare other patients.
Or, like CBT supporter, Municipal Chief Physician Elisabeth Swensen, claims;-
- ME patients "don’t want others to recover, as they will depart from the congregation."
Swensen who is a deputy member of the Council of Medical Ethics.
Click to expand...

Kitty · Mar 30, 2021

If anyone wants to watch it on a laptop or desktop, I think it might be possible to block the hands by making a couple of blank browser windows, and sizing and positioning them so they cover them. Fortunately, the subtitles seem to occupy a narrow space in the centre of the screen – I've only watched a few minutes so far, but I haven't seen the text stray outside this zone.

I've uploaded photo of how I set it up on mine. I use blank windows all the time, for instance to cover all the avatars down the left-hand side of the screen on S4ME.

Barry · Mar 30, 2021

Just watched this, and very, very impressed. I don't have ME/CFS, and I still agree the hand waving is distracting. I had the sound off.

Although it doesn't say anything that most people here won't already know, it does a super job of pulling most of the useful advocacy information together into a single presentation, which I think is a plus point not to be under-estimated. You could point someone towards this one presentation, and by the end of it will have covered enough material to have a very good overall insight into the the big issues, and names behind those issues.

Very good at developing lines of argument and pulling the threads together into coherent easily understood conclusions. Over and over, taking various subject areas. Hard hitting but objectively so.

I think the presentation possible works better if you just listen. I'm OK with subtitles usually, but a bit of an afterthought here maybe. But I think this could be a seriously beneficial bit of advocacy towards those new to the ME/CFS issues, but want to get up to reasonable speed with the fundamentals in a single primer.

Sean · Mar 31, 2021

Adjusting the subtitle settings to maximise their visual presence/dominance over the hands is helping me a lot.

Font colour - Green
Font size - 400% (maximum)
Background colour - Black
Background opacity - 100%
Window colour - Black
Window opacity - 100%
Font opacity - 100%

Imse · Mar 31, 2021

Really good summarizing of the ME scandal in Norway. I've only been able to watch part 1, or listened to, because of the waving hands.

For those who you who need to read the subtitles, You could try to stick some sticky notes on your screen to cover up those really disturbing hands.

It is so worth to see this documentary.

Pineapple · Apr 1, 2021

This is a great watch! The documentary is in two parts, which is easy to overlook.
Here is part two, since it hasn't been linked to previously;

https://www.youtube.com/watch?v=ij5nJIl2-ck

A thread describing the documentary "like a scientific Unrest movie":

https://twitter.com/user/status/1377254306856992772

Sly Saint · Apr 1, 2021

from 14:46 the Cochrane exercise review

In 2018, the journal Cohrane announced it would do a re-evaluation of a systematic review,
which concluded that GET is safe and may generally benefit ME patients.
One year later an amended version was published,
while a comprehensive independent review was planned.
This systematic review consists of 8 studies that analyzed the effect of GET on ME.
But it has proven to be problematic.
As this publication that re-analyzed the review concluded,
the Cochrane review ignored serious flaws in the included studies,
based itself on subjective outcomes, and ignored objective results and evidence of harm.
Five of the eight studies used the wide diagnostic criteria which are now advised against.
The review also only includes patients that had the capability and willingness to participate in GET.
Despite this, the researchers claimed the risk of selection bias was low.
As we can read from the Cohrane journal’s own initial evaluation,
they criticized the researchers for using unpublished data with different scales changed post hoc.
The researchers were also criticized for outcome switching;
with the original method it would not have been a significant effect at follow-up.
The review also excluded a study which found that ME patients e.g. had lower physical functioning-
--and increased pain and weakness after GET/CBT.
The investigators of this study underlined that the findings support the view that these treatments are ineffective,
not evidence-based, and may be harmful.
In addition, the systematic review largely ignored the objective findings,
like number of steps, oxygen uptake, work participation and other health measures.
In 2018, other researchers published a re-analysis of the systematic review.
It concluded that the objective outcomes provide sufficient evidence to conclude-
-that GET is an ineffective treatment for ME.
The Norwegian Institute of Public Health still supports the Cochrane review,
perhaps not surprising, as three out of the four researchers was affiliated with the institute.
Lead author Lillebeth Larun and co-author Kjetil Brurberg still work there today.
In relation to the evaluation of the Cochrane review,
a dialogue evolved between Cochrane and The Institute of Public Health.
The editor of Cohrane stated that the investigators’ conclusions appeared to be overly optimistic,
and that their descriptions were “stretching the truth beyond its limits”.
The editor underlined how Larun and the trialists of the included studies referred to all criticism as activism,
something Cochrane disagreed with, since much of the criticism was reasonable.
This didn’t stop Larun from going to the press,
claiming that activists who had plagued her for years now got to her editors.
For those interested in a tale centered around the Norwegian Institute of Public Health,
filled with prestige, campaigns to discredit objective criticism,
allies in the media and false allegations,
I’ll add some links in the description.
When it became clear that the Cohrane review was under re-evaluation,
prof. Kristian Gundersen at the University of Oslo entered the scene.
He too rejected objective scientific criticism as activism.
This is the approach Gundersen frequently adapts when he needlessly stirs up the ME-debate,
by using tabloid and stereotype claims which marginalize patients.
Like when he speaks about “the ME-war” and applies degrading historic references.
Or states that it’s strange how the idea of ME as a biomedical illness can result in religious convictions.
Gundersen has established himself as an eager supporter of GET/CBT for ME,
built on the premise that post-exertional malaise (PEM) is caused by inactivity/deconditioning.
In other words, he compares ME patients to healthy people that's out of shape.
I guess Celtic Football legend Davie Provan was just deconditioned,
when he in his prime had to retire at 29 years old due to ME (ironic).
As he explains; continuing to exercise was the worst thing he could have done.
According to Gundersen, then, two times MotoGP world champion, Casey Stoner,
only suffers from inactivity.
As specialist in infectious diseases Dr. William Weir states;
“I think the single most damaging misconception perpetrated on ME patients is the idea-
-that decondition is the problem and that exercise is the antidote.”
Gundersen himself states that he fights for science-based decisions.
Still, he compares those who criticize the scandalous PACE trial-
-with conspiracy theorists hunting for John F. Kennedy’s murderer.
This study still causes a lot of harm. Naturally, the criticism continues.
What about the more than 100 scientists, professors, doctors, psychologists and psychiatrists-
-from all over the world, e.g.-
Harvard, Columbia, Berkeley, Cornell and Melbourne University,
who have supported strong criticism of the PACE trial? (link in description)
Are they conspiracy theorists too?
Click to expand...

Barry · Apr 1, 2021

Pineapple said: ↑

This is a great watch! The documentary is in two parts, which is easy to overlook.
Here is part two, since it hasn't been linked to previously;

https://www.youtube.com/watch?v=ij5nJIl2-ck

A thread describing the documentary "like a scientific Unrest movie":

https://twitter.com/user/status/1377254306856992772

Click to expand...

If you can't see the subtitles then click on where I've highlighted. I could not see them at first.

Pineapple · Apr 19, 2021

A beautiful trailer with English subtitles was uploaded as well today. Definitely worth watching, only 95 seconds.

https://www.youtube.com/watch?v=ziRwFnKlWgE

Campanula · May 22, 2021

A reference list has been added to the video as well. Lot's of good sources and it backs up the claims made in the video.

Here's a direct link: Kilder ME-skandalen del 1.pdf - Google Disk

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