TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

[eafw]

BTW while promoting this it's come to my attention that there are an unfortunate large group of PWME mostly young and mild ill who take the UK spin at face value.

I think one of the things that could be going on here is that CFS/ME is still used as a wastebasket diagnosis, so there will be significant numbers of people being told they have the condition when they don't.

And particularly for some of the youngsters, who lack an understanding of the nature and history of the illness, they are quite happy to take the label (thinking it validates whatever they have as something special or important). They are then the ones who will "recover" when given a bit of time and attention - and of course these are the patients that the clinics like to deal with (as opposed to those of us who can't be brought round with a bit of lifestyle managment and "positive" thinking)

Again underlines the need for a proper protocol for making the diagnoses, and then getting appropriate treatment.

 

[alex3619]

And particularly for some of the youngsters, who lack an understanding of the nature and history of the illness, they are quite happy to take the label (thinking it validates whatever they have as something special or important).

Don't forget about the power of authority. When all the doctors you meet say it, it must be true.

Like miasma from swamps cause disease. Or you revive a drowned person by blowing smoke up their rectum. Or if you have an arrhythmia then giving a patient drugs to correct it generally improves life expectancy (though as with many drugs I suspect there are patient subsets for which a particular drug often helps).

 

[alex3619]

We can only pray as victims of the abusers, that justice will be served and full data released, even the atheists are praying.

My prediction : oh, no, large quantities of the data have been lost. Sorry, it cannot be released or reanalyzed.

 

[Snowdrop]

To answer some above questions.
Yes I'm referring to twitter. Because of the nature of twitter you ca see people who you are not connected to especially as recommended based on who you follow. The young people I'm referring to can be recognised generally by a few markers. Besides being young female they are not bedbound housebound. They talk about hobbies and most telling they take selfies of themselves all dressed in their best and have full make up with attention to perfect grooming. They are smiling. And here I'm probably crossing some line but they often have a lot of motivational happy inspirational you can do it, I will conquer, ME won't stop me blah blah blah tweets. They often have flowers and cute things in pictures.

I am certainly prepared to believe that these women are ill. With what is the issue. Many of us are self diagnosed but I think there is a difference in comprehension and due diligence that separates this group. In a paranoid moment I think that there is a burgeoning crowd in the UK with ME in order to confound the real illness. But I don't really know. I find it dispiriting to see these young women sometimes tangentially and unwittingly lend support to the BPS model without even knowing. They don't seem to engage or seek out info and for the next part I can't blame them they just want to go on like they did before.

How to connect them to the rest of the world of ME info?

Oh for a proper diagnostic tool.

 

[Esther12]

Hmmm.... Could just be that we're old... teenagers are always disappointing to people over 30. (It's not just jealousy... we want to be more responsible!!)

 

[Tom Kindlon]

Here's a link to a blogpost by Marina Kim on the PACE Trial and David Tuller's pieces: https://marinaexpress.wordpress.com/2015/10/23/pace-trial/

Cover note she posted on Facebook:

Marina Kim via Marina Express

PACE trial is one of the most flawed, yet, influential studies for ME/CFS. David Tuller shredded the study, and revealed unacceptable flaws. It's just shocking as a scientist myself that how people would go at length to manipulate the research data.

Seriously, how can 13% of people who were severely disabled enough to qualify for the study were simultaneously "recovered" at the point of entry because "recovery" criteria was more lax than the entry criteria? They really shot themselves in their feet with this one, IMO.

If I was doing statistical analysis on my data and discovered major flaws like this on my research, I will scrap it (well, actually I would publish the data truthfully because "no result" is also a valuable result that people need to know) even if it means I would have to start over years of my research.

 

[Raines]

BTW while promoting this it's come to my attention that there are an unfortunate large group of PWME mostly young and mild ill who take the UK spin at face value. They don't seem to be aware that so long as PACE stands there will be no medical treatments available to them (without private money). They will be stuck spending money on this and that tx experimenting researching with what energy they have.

Maybe I'm misunderstanding the situation but it seems that the media have done a fine job of ensuring that they will get well thinking happy thoughts (happy positive thoughts are big in this group).

And no that doesn't make me a pessimist. I'm a realist (most days).

I think your right, and I think I might (years ago) have been one.

When I was first ill and a teenager, it was AYME who me and my family turned to for help and advice. Them and well meaning but badly informed drs gave the bog standard advice, set base lines, increase gradually but consistently, don't think too much about it, don't sleep during the day, don't read the doom and gloom stories on the web. And of course I believed them, the stories in the papers seemed reasonable, it must be my fault that yoga can't heal me. I really did believe at times that I wasn't trying hard enough. It was the lightning process that started me really thinking about and researching this illness I couldn't understand why anyone thought it would cure them.

I wonder where I would be now if I'd got really good advice at the beginning, but it's ok, I understand now and while I'm still retraining certain friends and family with accurate information, it's such a relief to know that it's not my fault that I'm still ill.

Don't forget about the power of authority. When all the doctors you meet say it, it must be true
.

This is totally it, it took years of being ill before I stopped trusting every word a Dr said to me. We are told from a young age to trust certain people, Drs and policemen for example, and it is simply inconceivable that they might be wrong.

The article is amazing, the hard work put in by so many is awesome. Thank you all so much.

 

[Jonathan Edwards]

I wish I really believed that teens have a better prognosis and that some actually recover....
In those who seem to have recovered, I would very much like to know how they were originally diagnosed, how recovery is defined (what level of activity do they actually have....)....

An interesting discussion. I never looked after teens with ME and only a few adults but over the years I have come into contact with a small number of youngsters with ME. I agree that there are different subgroups of people who get this diagnosis but the people I am talking about had severe illnesses and were bedbound for months and not much better for a few years. They did not make appearances at clubs at weekends after being off school all week. I would not want a narrow diagnostic view that excluded them. At least some had PEM. And the two I know the outcome on after several years have recovered in the sense of having reasonably normal lives with full time work or education and good relationships. They did not suddenly become 'well', the road to recovery was slow and bumpy, and they are certainly not at the level of activity they were before getting ill. Their targets are very different, but not insignifcant. I think the idea that more than half of adolescents get reasonably better is probably true, although I would not be surprised if the usually quoted figures are misleading.

 

[eafw]

To be clear, I don't think anyone is saying that teenagers do not get ME or even that they don't get very ill with ME.

It is that alongside those who do have with this illness, there are a number who have been misdiagnosed - and within those, some who almost seem to revel in the label - and the way their supposed "ME" manifests and then resolves bears very little resemblance to the condition if it were being properly diagnosed.

 

[Large Donner]

Or you revive a drowned person by blowing smoke up their rectum.

If this really is true and I ever see a drowning person I hope I have some cigarettes and a straw with me.

 

[jimells]

Hmmm.... Could just be that we're old... teenagers are always disappointing to people over 30. (It's not just jealousy... we want to be more responsible!!)

Ha,ha, this morning a game warden came to my door, investigating some yahoos shooting deer waaay too close to houses. He didn't look old enough to shave.

I guess my cognitions must be distorted again, just like Sir Simon keeps telling us

 

[jimells]

At the [CFS/ME Research Collaborative,] collaborative’s inaugural two-day gathering in Bristol in September of 2014, many speakers presented on promising biomedical research. Peter White’s talk, called “PACE: A Trial and Tribulations,” focused on the response to his study from disaffected patients.

What a bunch of whiners! These people are really pathetic - it's sad they don't even know how pathetic they are.

 

[Snowdrop]

A new terrifying idea. ME becomes trendy. After complete marginalisation.
After trying to keep us invisible without success now they'll hide us in plain sight.
Does anybody here twilight zone music?

 

[Snowdrop]

I think your right, and I think I might (years ago) have been one.

When I was first ill and a teenager, it was AYME who me and my family turned to for help and advice. Them and well meaning but badly informed drs gave the bog standard advice, set base lines, increase gradually but consistently, don't think too much about it, don't sleep during the day, don't read the doom and gloom stories on the web. And of course I believed them, the stories in the papers seemed reasonable, it must be my fault that yoga can't heal me. I really did believe at times that I wasn't trying hard enough. It was the lightning process that started me really thinking about and researching this illness I couldn't understand why anyone thought it would cure them.

I wonder where I would be now if I'd got really good advice at the beginning, but it's ok, I understand now and while I'm still retraining certain friends and family with accurate information, it's such a relief to know that it's not my fault that I'm still ill.




This is totally it, it took years of being ill before I stopped trusting every word a Dr said to me. We are told from a young age to trust certain people, Drs and policemen for example, and it is simply inconceivable that they might be wrong.

The article is amazing, the hard work put in by so many is awesome. Thank you all so much.

It would be nice to have better stats on this particular group. So that they could be properly informed as to expectations for prognosis.
Meanwhile I wish there was a way to prevent them from drinking the kool-aid (Metaphor for swallowing the nonsense)

 

[jimells]

And of course I believed them, the stories in the papers seemed reasonable, it must be my fault that yoga can't heal me. I really did believe at times that I wasn't trying hard enough.

As you know, you have been subjected to cruel and abusive treatment. Most sensible people would call it child abuse.

The one thought that keeps me going, year after year, is that I am determined to see the day that Simon Wessely and cabal are called to account in a court of law. Their work is so obviously fraudulent in every way. It may be my imagination, but I keep thinking I hear a pack of hounds sniffing out a very profitable class action lawsuit. The disability insurers have very deep pockets - are they deep enough to quash legal action?

The psychobabblers should be in the dock for promoting abuse of patients and contributing to the suicides of many patients. Unfortunately the establishment elite seldom clean their own house, so they will never face prosecution. Just like with biomedical research, we will have to depend on the private sector to get justice.

 

[jimells]

A new terrifying idea. ME becomes trendy. After complete marginalisation.
After trying to keep us invisible without success now they'll hide us in plain sight.
Does anybody here twilight zone music?

If's a funny thing about trends. After a flash in the pan, they tend to disappear.

The strategy from the very beginning was to make the patient cohort so large and heterogeneous that any signal from our illness is simply lost in the statistical noise. That strategy is still in play today, and making the illness "trendy" would fit right in...

 

[Sasha]

I'm starting to consistently misread this as "Trial by Terror" now.

Just blown away by David Tuller's work on this. That guy deserves a medal.

 

[alex3619]

If this really is true and I ever see a drowning person I hope I have some cigarettes and a straw with me.

They used a special tube. Lol. I think this was an 18th century or 19 century treatment. It was of course tobacco smoke, its good for you.

 

[alex3619]

Many of us are self diagnosed but I think there is a difference in comprehension and due diligence that separates this group

The misdiagnosis rate with doctors is also huge. Yet I have talked with at least one patient who claimed they can exercise hard for hours, and who was convinced it was due to a failure in their chakras.

 

[Snowdrop]

I really don't know what to propose as a solution for this. The information is out there but particularly in the UK we get these bizarre stories.
Are they warned not to go looking for information? This is why I think that a major news outlet needs to break with the status quo and provide accurate info.