PACE is Dr Peter White (St Barts hospital). Barts is where Tony Pinching worked with his CFS 'experts' (Occupational Therapy, Physical Therapy, Clinical Psychologist).
With PACE you could be mistaken the situation in the UK of no effective treatment is to do with psychiatrists alone, but this is not so. Non mental health teams adopt the psychiatric view that claims CFS is maintained by faulty illness beliefs and activity avoidance due to these beliefs, that worsen fatigue and that the fatigue has no organic cause and is caused by poor sleep and deconditioning. (Comprehensively proven false with CFS biomedical research from outside of the UK).
Even if PACE had never been funded, NHS immunologist and member of the UK working party report on CFS/ME in the UK says the following about CFS sufferers treatment in Prescribers' journal, 2000. Proving this.
Professor Anthony Pinching:
Complementary therapists may also provide a supportive role for many patients, but they sometimes introduce or reinforce unhelpful illness beliefs.
The essence of treatment is activity management and graded rehabilitation.
Adjustment to the illness, and a behavioral response limiting its impact while maximizing the extent and rate of recovery is crucial.
Others overcompensate and avoid activity, fearing relapse, but then develop symptoms of de-conditioning cardiovascular and muscular unfitness or excessive awareness of physiological changes.
These outdated views of UK 'CFS/ME experts'
are a world away from Dr Chia's who undertakes tissue biopsies on his CFS patients and prescribes antiviral drugs, but the American system of CFS treatment is vastly superior after all and thankfully evolved away from the UK's primitive beliefs, as long as you have private health cover that is....
The message above is that people with mental health problems can improve from CFS from psychiatric intervention that Dr Pinching (immunologist) recommends. So we can see that PACE is not just to blame as a recent phenomena of CFS confusion, its the actual system in the UK is entirely a shambles because it isn't based on scientific evidence, which is meant to underpin medicine!
It would be easy to presume that the UK PACE cohort contains a solely psychiatric group of patients but the PACE trial had very poor results if the patients were representative of chronic mental illness, as hardly any recovered, by what we define in normal society as recovered that is. The PACE trial participants couldn't be mostly mentally ill after all. Most of them must have had CFS instead.
This is useful to consider because it demonstrates how organic illness (including ME) can easily go undetected, and misdiagnosed as psychological or 'mind body'. (No blood test for 'mind body' exists, no scan, no nothing). All organic diseases are worsened by stress (mind), but not
treated as a mind problem, but a body problem. Diseases require medical drugs for the disease, such as insulin not CBT as an alternative to insulin. (CBT is currently the alternative to B cell depletion).
PACE trial participants were presumed to be (mind), but weren't. The Wessely school theory failed, and failed utterly. CFS indeed contains people with serious health problems that are not 'mind'. As we all knew along.
PACE participants failed to recover with the treatments (the Wessely school (psych background) and Dr Pinching (immunological background)
and others all say work for CFS), because the treatments basically don't work, except marginally. It might also explain why actimeters were removed before the trial ended,arguably because the researchers realized that their mind body theories on CFS were wrong, and they needed to affect the outcome of the paper. Which they did. (So they had to change the meaning of the word 'recovered'). The freedom of information act request was denied for PACE again in the UK. (It was also denied in the past over MRC research funding being turned down). MRC primarily fund psychiatric research into CFS.
Denial over organic causation of ME (inside CFS) protects evidence of the causes of ME becoming public. No one from PACE is prepared to tell the general public their definition of recovered in the paper's data for CFS because we know what the answer is. This would end the CFS/ME game, biomedical research would take over psychological. ME would be essentially discovered inside CFS, probably within ten years of robust biomedical research into CFS.
So there is an irony that the PACE trial was the weakest possible cohort of CFS possible, but PACE
still failed to demonstrate the effectiveness of CBT and activity management. In a twist of fate, this is a a rather good outcome if you have CFS because it shows that CFS is
not a psychiatric health problem, despite the claims of effectiveness for interventions from people who treat it as such but never say it is.
PACE has large influence in the UK and was reported oversees, so the authors of the PACE trial need to be careful what they are claiming because other countries may adopt it, if it is sold to them (psych rehabilitation industry and insurance companies). To avoid other countries in the future seeking compensation for damages towards the UK (if the CFS sufferer has ME or another disease diagnosed as CFS) are physicians screening to make sure people with these disorders they call CFS aren't harmed by clinicians with faulty illness beliefs, by first, ordering specialist diagnostic tests on people they believe have CFS before a PACE style therapy begins? I think not.
What might happen, if a person isn't screened and then sufferers harm? Injury or deaths are possible.What might happen if a patients isn't screened by the doctor, because the doctor read the sensationalist reporting of the PACE trial and then didn't refer their patient on for specialist tests? Cancer, autoimmune disease, heart failure could be missed.
The UK House of Lords debate should have covered these matters but as you can see if you dig deeper the 'speakers' for ME/CFS were a psychiatrist and those linked to other areas of mental health, the Welcome Group (ex vaccine manufacturer) and women's reproductive health. Only one wasn't! The house or Lords debate, was therefore not a debate on ME/CFS, because it was massively one sided with people who could have represented ME patients and organic CFS,not speaking.
This should be expected in the UK, however, and is part of the system at work.
If a more balanced debate has been permitted, what could have been discussed is raising cautions on behalves of patients in the UK (who are affected by PACE trial data) who likely haven't got the medical knowledge to understand there is no scientific evidence that CBT is effective for CFS, and that their own personal CFS might be caused by other organic factors that could be treatable if diagnosed.
Claims of PACE data being used to make claims of a safe treatment option for CFS increases likelihood to treat CFS as a mental illness, which paradoxically Pace proves is not the case!
The Americans could run the UK system and get it in good working order, but they don't have a 'House of Lords' and for good reason. Science needs to be debated by scientists, not 'Lords' who don't even have to be a scientist to have influence on the UK general public, and in this case the influence was entirely unhelpful, unless you have chronic fatigue of mental health origin.