Artstu said
I for one don't think yet more research on managing the condition is to be welcomed, I know how to manage my limited energy already, as I'm sure most suffers do. You should be telling them to stop wasting money on this kind of research, and spend the money on biomedical research instead.
Reply:
Don't agree!
One of the key reasons why it's difficut to challenge the claims relating to GET is that we don't really have any sound 'evidence based medicine' with results from large robust and replicated clinical trials that support the view of patients that pacing is the most effective and safe form of activity/energy management for people with ME/CFS. Simply trying to make our case using patient evidence - ie the sort of large scale patient surveys that the MEA carries out and publishes - just isn't good enough.
Secondly, we do need data on why some people with ME/CFS (myself included) have been able to progressively increase their physical and mental activity levels (without the use of drugs, diet, supplements, magic cures etc) whereas others are just not able to do so - despite very strong motivation. We then need to translate this information into practical personalised management programmes based on stage, severity and variability of symptoms.
There are other reasons as well....
We do not need an “EBM” study on activity management to dispute the PACE hypothesis anymore than migraine sufferers need an “EBM” study on whether listening to extremely loud heavy metal helps there condition.
Also there are studies out there disputing PACE or at least CBT and GET namely the Belgium one.
We should not be expected to accept that because over 20 years you have improved your activity without “magic cures” that we need to waste any more time or money on activity management studies. If we are required to accept your statement of improved activity at face value then surely you understand that the overarching majority of ME sufferers cannot improve their activity levels without the necessary biomedical interventions and by making absent more nonsense trials on pure “activity management”.
What exactly would be the point of wasting any time or money on “disproving the PACE hypothesis when PACE disproved itself. It failed period. I just don’t get how we are required to validate oursleves with a pacing ourselves study when the PACE study proved GET and CBT have zero impact on improving the lives and physical condition of people with neuro immune disease. (I may not have worded than clearly). I fail to understand this logic and it is totally the opposite of the purpose of validation studies. If something costing £5 million to test a hypothesis fails to prove such a hypothesis that’s it. Just what do WE on the opposing paradigm need to prove. We just have to point out the factual data.
Not only that but it must be pointed out that the criteria used in the PACE would most likely produce a given number of “recovered” or improved people anyway over the period of a year regardless of any “interventions” or SMC. That must be factored into bullet points in responses especially to the press.
If we compare the ME Association response to the latest media onslaught to that of the Swedish ME organisation and the IinME response to the P2P it is I am afraid it is in parts frankly verging on embarrassing and weak.
I really feel that the ME Association and AFME often act like a boxer stepping into a ring and being afraid to throw a punch incase they make the opponent angry.
The problem is we are up against dirty opponents in the Wessely school. The PACE trial and many other revelations of their conduct time and time again reveal noting but shear fraud manipulation lies and spin.
It is really about time we had a 50 experts letter version of such issues as we did for the CFSAC ICC criteria issue. We need our experts to once and for all step up to the plate call a press conference and just say it like it is about the Wessely school. The man is a fraud period.
There must be at least 100 factual bullet points that can be put forward about them to prove their utter nonsense and deception over the years. Until this is done we are acting foolishly I am afraid falling time and time again for the same old trick of being caught on the defensive when they bombard the media and medical journals with, both, utter opportunist and well planned out crap and lies. We then turn to fire fighting and fall into the trap time and time again of being portrayed as being “militants and opposed to scientific endeavours. Its obvious this is the position the Machiavellians in the Wessely school want us in. Continually on the back foot.
Its really time for people like Lipkin and the fifty experts letter people to show their true colours and simply tell it like it is. If those fifty experts and Lipkin cannot pull the PACE trial apart and other nonsense like it, with one joint voice publicly, simply by pointing out clear facts and contradictions I am afraid I have lost all faith in them actually achieving any thing for us on the whole. I just find it shocking that we are told EBM is the way to disprove illusions lies and spin. It is not, the way to disprove it is to point out to the wider world and the whole scientific community, the media and the medical profession that Wessely et a al have disproved themselves.
It is kind of like cancer researchers testing whether mineral water, purified tap water or non existent SMC is the cure for cancer and then declaring one to have shown some minor reporter bias improvements in a trial costing £5 million and then going on to attract the world media’s attention to declare one water over the other as the cure for cancer whilst the rest of the scientific community sits by and lets them do it.
We don't need another “evidence based” study to test GET CBT, or any other “activity management” plan for ME any more than we need an EBM study to test if sugar is good for obesity.
We certainly don't need to test such “activity management” plans if they take 20 years to show some minor improvement and leave us still with the same condition. Many of use don’t' have 20 years left.
This post is not aimed at the individual character of any person within ME advocacy charities or organisations but it is a straight forward firm call for strategy change. It just seems such common sense to me that we do not have to sit back and wait for a “cure” or a biomarker to be discovered to once and for all on mass with our experts and Advocacy groups finally take the front foot and call press conferences etc in exactly the same way the Wessely school do. There’s no reason our experts on mass in one press conference cannot “peer review” the lies and spin put forward by Wessely et al. The difference is they are liars fraudsters and spinners, we are not.
All we ever do is get caught off guard when they dump crap on us, and the thing is its always the same crap being span as “new evidence” or proof of XY or Z. Either that or just shifting the goalposts and pushing the same flawed logic.
Until such an event happens I really feel that our experts are letting us down, and actually making it harder for themselves, by leaving much of the fire fighting to us in numerous FOI requests, comments on articles in comment sections etc etc. One, it is so taxing on us and two its way to easy for the Wessely school to spin this as “harassment by militant MEers” as they constantly do. There is also the issue of real experts not being able to get funded for quality biomedical studies because they refuse to point out the years and years worth of obvious lie fraud and flawed methodology coming from biopsychosocial school. Why would anyone fund real biomedical studies if they are constantly bombarded with unchallenged spin and lies form that BPS school in medical journals and the media.
I mean for goodness sake the evidence of their fraud, BPS model, and failed treatments is out there in black and white. Do our 50 experts from the NIH CFSAC ICC letter and others, really think the media and the scientific world outside of ME is going to go looking for that on their own. It would be like the police randomly going around looking for murders. That's not how it works . It is also the case that the Wessely school is hiding behind a protective cloak of “scientific endeavour” which the average person would see no reason to unzip.
I thing the position we are in with individual Advocates/ Charity responders is they feel like David going up against Goliath taking on a mountain of massive PR spin, the insurance industry, the DWP “austerity” issue. They also have to make quick on the back foot unprepared or perhaps under prepared replies.
I am just shocked that so many of the ME charities responses didn't even mention the fact that the IOM has called for the very criteria used in the PACE trial to be retired and why. Its a fact that this happened regardless of ones view on the matter. Its evidence in black and white. Its a massive bullet point that simply would make it difficult for a journalist to get out of context or misquote to make it mean something else.
It would, I feel, be the best strategy to put a journalist in a position to try to think for themselves to see the bigger picture rather than the journalist just running around London on company expenses going to briefings and just copying and pasting a script written for them by people like the SMC. I am under no illusion that this would definitely happen however.
I do feel that often the less said in response to a journalist is the best route as they can take a quote and place it where and how they like in any context. Also they can simply have no grasp of the overall issue. That's why a short bullet point statement of proven facts (especially on the PACE trial) would be the best way to respond time and time again.
I therefore call on, at a minimal, the 50 experts who signed the NIH CFSAC ICC letter and aslo include Ian Lipkin, to come up with, lets say 50, bullet points about the conduct of the Wessely camp, call a press conference and take the PACE trial and the Wessely school to task. If that never happens we will be sitting here in another 20 years still facing medical abuse, stigma, disability benefits attacks by companies like ATOS and ill informed nonsense being put out it in the press.