• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Information Commissioner's Office orders release of PACE trial data

Research 1st

Severe ME, POTS & MCAS.
Messages
768
The whole fabric of medicine is to blame for this CFS as ME disaster, not just the PACE study, although PACE is a key enabler of allowing doctors to ignore the patients suffering as genuine disease based ailments.

Allowing PACE to become 'fact' (when no science is performed) is an effect of the mindset of how ME sufferers are thought about by the medical professional who simply turn a blind eye to blatant discrimination and don't keep an open mind they might be wrong, as it's too much bother, to bother, and if they are wrong, they won't be in any trouble anyway as they're just following orders.

The PACE scandal has taught us:

Universities refuse to release academic data for a publicly funded study, with no legitimate reason for withholding.
Medical institutions funded PACE (they are responsible for PACE being produced) .
Journals who published and promoted PACE are to blame (how was PACE ever approved as a quality study?)
NICE had to back the non evidence therapy (they are responsible for approving CBT/GET in the UK to doctors).

What is so tragic is this:

No evidence ever existed for CBT GET therapy being effective,safe, or relevant to people with Myalgic Encephalomyelitis or Myalgic Encephalopathy as no 'ME' sufferers were ever monitored medically, or even asked their experiences about the alleged 'effective' approved PACE therapies said to reduce symptoms by the psychiatrists, and then the NHS, both who deny ME as a separate disease from CFS.

When ME patients who aren't F48.0 Chronic Fatigue, but who have severe ME, are asked about the 'therapy' prescribed to them, we learn:

In 2004, the UK Charitiy, the 25% ME Group (severely affected) took a poll on it's members, in which 95% of patients said GET made them worse.

Source:

Questionnaires and Surveys
March 2004 Severe ME Analysis Report
http://www.25megroup.org/info_group_publications.html


So bizarrely, in effect, the UK Department of Health (DOH) groomed the delusional theorists and allowed them to run amok and gain ground with an illegitimate theory than metamorphosed into supposed fact, by simply repeating the claim over and over again that patients own minds (not disease) maintained their symptoms, but never then presenting a single scientific fact, to back this up. (A theory of 'fear avoidance' in CFS, is not Science, it's a theory).

If science had been performed, PACE would not have been permitted.

Science would have used a measurable medical finding. E.g. Comparing heart rate, serum oxidative stress markers, core temperature, V02 Max, Cytokines, QEEG brain mapping, and Cognitive function tests in ME sufferers (G93.3) Vs healthy controls before and after graded exercise therapy (GET) and over time. That is science. This was never done, psychiatry doesn't require anything to exist, for it to exist. These variables also would not have been used in F48.0 CFS (as in PACE), but G93.3.


The DOH, via the NHS is recommending a therapy that had no evidence for it working! The DOH could have ignored PACE, they didn't. If that had never happened, PACE wouldn't have had any effect on society and consequent medical neglect of the patients (no science based treatment is given to the ME patients (in it's 46 years of being officially recognised by the World Health Organisation), so it's luck if the patients survive or perish.

The MRC would never have funded PACE if they knew the 'results' would be pinned on neurological diseased patients with the potentially fatal (ME). Sadly, that did happen, and the people who approved this will have to now be sued for causing deaths to the patients, and (ironically), mental illness in the form of secondary PTSD, depression and suicidal ideation, due to the cumulative dehumanizing effect from the relentless media attack against ME patients as inferior people, the way doctors don't believe them, and the way the 'therapy' makes their symptoms worse.

So when we think about how bad PACE is on an academic integrity level, we should remember how PACE was allowed to gain ground in the first place by people in power to say yes or no to the concept and asking for £5 million to fund it.

It's a conflict of interest to deny ME via F48.0 CFS, but one over many decades of time lost and lives lost. PACE is a vital segment (but not the whole picture) in the history of the neglect of the ME patients, via the CFS from America being sent over the pond to create 'CFS/ME' in the UK and this 'idea' spreading in Europe. As we speak European patients, (not just in the UK) are locked in psychiatric units for having severe ME and being bedridden from the effects of the disease.

All of the dots need to be joined, in order to formulate an effective legal action as the next step to protect lives and protect patients from suffering more mental health damage, especially from British journalists who use the media to trash talk about ME patients knowing no one in society cares, there is no come back,and the patients and their families are too scared to complain to the newspapers fearing retaliation by Big Brother, who may take their children away (as happened to poor Sophia Mirza, RIP).

PACE is arguably a big cog in the wheel, but not the wheel. The system kept the wheel turning, and other people need to be in the high court for what they've done.

Lets hope people in high places start seeing sense and see that ME (via F48.0 CFS) is just another MS misdiagnosed as Hysterical Paralysis, and as there are thousands of biomedical research 'CFS' papers, that is not an acceptable policy to continue in a democracy that currently operates as a plutocracy, because it's been agreed this is how they 'manage' the situation best, politically.

Science can over-rule politics. HIV taught us this.

Remove the bizarre current in situ power hold that psychiatry is a science for ME, and the politics will change too.

It would be less embarrassing for the state to do this now, than wait 3 years for the Norwegian 'CFS' patients to cue up on TV, and Social Media with their camcorders showing the before and after effect of Rituximab. And they will do. Individuals made a lot better,or even cured, won't keep quiet about it. They will tell everyone.

It's thus in the best interest of academic and medical institutions backing the current peculiar stance on withholding data on PACE to change their obstructive tactics and have one that is open and transparent to high quality ethics and science. Otherwise, they many also be implicated too, in ME patients being harmed by a therapy that has no evidence for it working!

Will that happen, or will they wait until the patients are in the newspapers telling everyone how they were abused for 30 years and never believed. Lets see I guess.
 
Last edited:
Messages
15,786
It's astounding that the PACE team tried to claim that this data could threaten patients' anonymity. I can just imagine getting the data 60, 65, 28, 25, 10, 10, yes, yes, 4, 3, 321, 332, CBT and announcing to the world, "Yes, that's Annie Gsampel! I'd recognise her anywhere!"
:eek: Hey, how'd you find me out?!?

:rofl:
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Is there a danger that even that would be seen as some sort of terrorist activity?

I don't know, but it seems that patients are expected to act in an amazingly docile way while trying to gain access to information that is so important to them. Wanting to encourage a public body to do the right thing could be totally beyond the pale.

They are going to do what they are going to do regardless of what advocates do or say. If we all died tomorrow they would still attack us. Therefore we must press the advantage while we can. I've taken plenty of lumps already - a few more won't matter.

I realize many folks can not take a militant position for many reasons. Being an "angry militant" opens up space for folks like @charles shepherd to play the "good cop" and engage in diplomacy with political leaders. So there is plenty of room for everyone to participate in whatever way they are most comfortable with.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
The whole fabric of medicine is to blame for this CFS as ME disaster, not just the PACE study, although PACE is a key enabler of allowing doctors to ignore the patients suffering as genuine disease based ailments.

:thumbsup:

As a society we have been well-trained to reject the very concept that Our Dear Leaders could ever collude to harm sick people. But "criminal conspiracy" is a very real concept in law and exactly describes what has happened to us. In this case the conspiracy originated with the disability insurers. An interview with Tom Hennessey, published on this forum, is well worth reading, more than once.
 

Ecoclimber

Senior Member
Messages
1,011
Yea, people in the social science field especially in BPS school of thought can make things up, twist and manipulate data to support their own pre-conceived hypothesis. Just take the DSMV manual. Caffiene withdrawal is now considered an organic mental disorder
James C.Coyne@CoyneoftheRealm 5h5 hours ago
James C.Coyne Retweeted sarah pressman
John Greden proposed caffeinism as joke. #DSM took him seriously. Caffeine-induced Organic Mental Disorder
 

worldbackwards

Senior Member
Messages
2,051
Being an "angry militant" opens up space for folks like @charles shepherd to play the "good cop" and engage in diplomacy with political leaders.
What we've seen on Twitter over the last week is that the "militant" brush is used to tar everyone who disagrees with them. It's also been used against people who are doing little more than being a bit niggly and argumentative. Angry militant really doesn't help.
 
Last edited:

Sasha

Fine, thank you
Messages
17,863
Location
UK
In the UK, "militant" has overtones of "the militant wing of the IRA" - that is, the ones who used to blow people up, as opposed to their "political" wing.

A google search shows "militant" as meaning "confrontational" or "violent". There's obviously a big difference. I prefer to avoid the word "militant" for obvious reasons, given what PWME have been accused of. If people want to be verbally confrontational (as opposed to abusive) then I think that can be appropriate - but never violent.
 

soti

Senior Member
Messages
109
I know but they like to spin it as though it's on the same level as biomedical research.

Of course, though, scientific methods don't care what the object of study is. There is such a thing as good psychological research and bad biomedical research. The XMRV story was a case of the community working well to weed out bad conclusions. This is too. Interesting how slow it's been with PACE, but better late than never. At last it feels like it's time to pop some popcorn... :)
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
The next new PR username of Annie Gsampel is up for grabs - and I think that the person who proposed it should sign up for it right away or risk having it snagged away like a bride's bouquet being flung to a crowd of spinsters. Or perhaps nominate someone who should have the honor of that username, if you don't want it.

Imagine the number of likes you'll get with that username - a few gazillion.
 
Messages
2,087
What we've seen on Twitter over the last week is that the "militant" brush is used to tar everyone who disagrees with them. It's also been used against people who are doing little more than being a bit niggly and argumentative. Angry militant really doesn't help.

I don't think it matters much if we have angry militants or not, they will continue to make out as if we are all a bunch of crazy militants.

Memilitants posts on Twitter were extremely tame and they were used as an example of harassment.

So there is no point in being too careful or polite here, say it like it is.