Any short summary is going to miss out some details, but I reckon the UK deserves a bit of a kicking tbh.
Esther, your wish is my command. One based on history and a continuation of history that (via PACE) we see was blueprinted by medical quackery. (Patients alleged to 'think' themselves better to reduce symptoms as symptoms 'persist' the condition, not disease).
Firstly, any hope that the UK research collaborative is a 'biomedical ME' research programme is incorrect and patients hopes will be dashed if they don't see the obvious. What the UK 'collaborative' actually is, is a blend of biomedical chronic fatigue research (not ME as no neurological signs are required for 'CFS/ME') and psychiatric chronic fatigue states. To discover the 'cause' of ME, it is totally inadequate to have a 50% research basis for organic ME CFS + 50% against it and simultaneously promote this as
truly 'biomedical' with the usual boating hyperbole we're so used to 'the very best', 'superb' ' brilliant' 'incredible'. (For example we don't have a group called the Women's equal pay initiative where 50% of advocates say women should get paid the same as men, and 50% say no. That's not a collaborative, it's a separation). Perhaps the UK CFS fatigue separation group would have been more an adequate title.
Tuller and now this 'isn't all in your head' supportive article states what we all knew anyway, but the Wessely school isn't over as some think, it remains in place just with a new label and some biomedical fatigue thrown in. Conversely to the British MRC, the IOM in America
rejects CBT as a therapy to reverse symptoms. Thus, the UK is nowhere near the American level of science, as some believe.
An odd finding with MRC's Dr Holgate conveniently absent from AFME, ME Assoc and colleagues enthusiasm:
Dr Holgate invited Wessely to select researchers for the research collaborative* The names of which were then redacted.
Wessely, like Crawley
also believes ME does not exist,as is
not an organic disease process.
*This information was made public by an FOIA request.
As extreme ME can be fatal, and as CBT GET is fraud (when sold as a treatment for 'ME') there is no accuracy that UK research is indeed in-line with the Americans or more advanced. For example, Americans (looking at severe CFS) at Stanford medical school discover massive cytokine inflammation ''highly highly elevated'' (Dr Montoya in his talk to the UK research collaborative recently). Unlike the British, Dr Montoya also reports, over the years, that
CFS patients die from Cancer. American, Dr Peterson also has shared that 'CFS' can kill patients from rare mantle cell
Lymphomas at rates far higher than in the average population.
The Wessely School mindset was, thankfully,absent from the American IOM (which Dr Holgate says he wants to replicate in the UK - a sensible idea), however the Wessely School mindset
is part of the Research Collaborative.
So no, the UK research collaborative are no where near the level of the Americans, due to it being infiltrated by the Wessely School mindset. Crawley's ideas are actually those of of White, Chalder and Wessely. This is fine for psychosomatic functional disorders, but likely dangerous for organic disease CFS states and ME
Reversing from the quackery:
The MRC chose to not fund biomedical research for years, 'coming together' now (with ME denial experts and biomedical fatigue research) to pretend this is all fine and dandy, but when patients are deceased (due to no biomedical research) this won't wash
if you know the history of medico-politics in the UK. Older severe ME patients, still alive, some now have sensory and autonomic neuropathies (nerve damage), some with kidney and liver problems, diabetes, heart problems, and even lung damage (COPD). These are most unusual chance findings in people who have 'belief' in disease and who have 'no evidence of ongoing disease'. That is true, but at year 0. How about researching year 25?
Away from the CDC, wise Americans can see the writing on the wall with CFS as a concept. There are now a few independent research facilities (Simmaron, OMF are leading the field) formed. The British, haven't even got
any independent researcher facilities like these.
http://simmaronresearch.com/
http://www.openmedicinefoundation.org/
http://www.wpinstitute.org/
In fact it was an ME
charity (Invest in ME) who helped get the funding for the UK Rituximab trial, bizarrely mostly funded by patients and their supporters as the UK health agencies refused to fund it, but curiously, the MRC did fund PACE. What a clever and memorable move.
I'm afraid all of this tragedy is a sign that s
ocialism cannot possibly compete with capitalism when it comes to science freedoms. Malignant socialism is the lesson here of PACE and the MRC gaining ground and the NHS all fusing together to decide on their idiotic decision to declare 'CFS/ME' as ME and patients symptoms based on 'beliefs'. Still funded!!!
Indeed, it
was cost effective to initially blame the infected patients and deny biomedical research funding. (Through disease denial the patients remain 'mentally ill' as no science helps to solve the cause of the disease). It was simple, it was easy and still is. No one can argue with this as a premise for management, psychotic and deranged perhaps when dealing with people's health and lives, but certainly a plan that's easy to implement.
Post PACE:
The British will simply move the goal posts from psychosomatic to biomedical 'fatigue'.
ME sufferers don't complain of fatigue as their primary complaint.
Severely affected (never researched) multi decade neglected ME sufferers, can develop:
Neuropathic pain (shooting nerve pain from peripheral neuropathy, trigeminal neuralgia etc).
Muscle weakness worsened by movement.
Muscle fasiculations (CNS sign).
Weak breathing muscles including paroxsymal hypoxia.
Vertigo, dizziness from upright posture, standing, walking and CHRONIC REPEAT INFECTIONS.
Associated Nystagmus (CNS sign).
Sluggish pupil response to light changes (CNS sign).
Potentially FATAL Cardiac arrythmias (SVT, VT, AF) and vasospasm angina (severe crushing chest pain).
Loss of IQ.
IgG subset deficiencies (immune supression).
Mold/Myotoxin infections (sign of immune supression).
Confusion (Try driving a car, or leaving a gas cooker on when confused).
Low Blood volume (greatly restricts movement).
Destructive Arthritis, Ostoporosis (risk of fracture, painful, impairs movement).
Life threatening Allergies, Asthma, Diabetes, Hypertension, Hypotension, Hypertensive Crisis (fatal if untreated).
Paralysis, bowel and bladder incotenance.
Gut motility damage requiring TPN
HOW MANY OF THE ABOVE (SIGNS OF NEURO DISEASE), ARE BEING RESEARCHED BY THE UK RESEARCH COLLABORATIVE? (Psych Fatigue + Biomedical Fatigue research).
The British MRC (state) funded collaborative are NOT equal to Americans EXPERTISE of independent biomedical CFS research, they are in retreat, waving biomedical flags hoping we never noticed what happened.
Except as Dave Tuller's article and Steve Lubet's now discuss, we
did notice and being the rodent (prey) hunted by the psych lobby (attacker) isn't nice. PACE is the definitive medical finger print that provides forensic evidence you can't make a theory of a disease policy, and get it wrong.
The health agencies got it wrong, badly, and 46 years later a few bored people just woke up to the idea.
A 20 year old young woman who developed severe ME in 1969 is now 66 years old, if alive, with no treatment modality in sight. This means they never had an adult life, because of the views of other people as a movement of people (minority).
Who last did that to a minority, involving millions of people? It wasn't cats.