-
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, 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.
"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..
- Thread starter charles shepherd
- Start date
- Messages
- 21
So basically this trial tells children they can think themselves well, but it will only work if they don't outwardly express any ill feelings. Then gives them a patient survey asking them how well they feel, AFTER they have been taught that they are not allowed to answer any of these questions in the negative because if they do, it will be their fault that they are still ill. So of course they score higher, because they are basically told that if they don't, it is their fault that they are sick and they are making themselves ill!
Even the measure of school attendance is not objective, because you have taught them that they are not allowed to think themselves ill and any ill feelings must be "stopped" and basically ignored. So as any kid knows, you don't usually get out of going to school unless you are sick. They then have no choice but to go to school, no matter how they feel, in order to stick with the training to believe themselves well, and that any ill effects from that forced attendance must be ignored.
In other words, you are outright brainwashing them to give the answers you want.
Why is a patient reported survey even a part of these studies? There are so many other actually objective ways to measure baseline and outcomes.
Yes they have some value in conjunction with other things, but it is a well known matter of fact that self reported patient surveys are one of the least objective measures of any study to begin with because they can me greatly affected by positive thinking related to beliefs that you are actually receiving treatement. You can see this in many placebo controlled studies where patients believing they are receiving a new treatment rate their abilities higher on a patient survey. It is called the placebo effect.
Also, did I misread or are they calling this a controlled study? Maybe I am misunderstanding something about what that means, but what I was always taught in science class was that a truly controlled study involved both the control group and the active group receiving something new that they hadn't before and no one knowing who was and was not actually fetting the true treatment. This is used as a means of making sure the improvements reported in a study were NOT just the result of a placebo affect.
They didn't use a placebo control group in this study. They gave the control group the standard medical care, which unless both groups were entirely all newly diagnosed patients, they would have already had those treatments before and would already know that was just standard care.
I really do struggle to understand how these trials keep getting any recognition when they are so completely and obviously flawed.
Even the measure of school attendance is not objective, because you have taught them that they are not allowed to think themselves ill and any ill feelings must be "stopped" and basically ignored. So as any kid knows, you don't usually get out of going to school unless you are sick. They then have no choice but to go to school, no matter how they feel, in order to stick with the training to believe themselves well, and that any ill effects from that forced attendance must be ignored.
In other words, you are outright brainwashing them to give the answers you want.
Why is a patient reported survey even a part of these studies? There are so many other actually objective ways to measure baseline and outcomes.
Yes they have some value in conjunction with other things, but it is a well known matter of fact that self reported patient surveys are one of the least objective measures of any study to begin with because they can me greatly affected by positive thinking related to beliefs that you are actually receiving treatement. You can see this in many placebo controlled studies where patients believing they are receiving a new treatment rate their abilities higher on a patient survey. It is called the placebo effect.
Also, did I misread or are they calling this a controlled study? Maybe I am misunderstanding something about what that means, but what I was always taught in science class was that a truly controlled study involved both the control group and the active group receiving something new that they hadn't before and no one knowing who was and was not actually fetting the true treatment. This is used as a means of making sure the improvements reported in a study were NOT just the result of a placebo affect.
They didn't use a placebo control group in this study. They gave the control group the standard medical care, which unless both groups were entirely all newly diagnosed patients, they would have already had those treatments before and would already know that was just standard care.
I really do struggle to understand how these trials keep getting any recognition when they are so completely and obviously flawed.
- Messages
- 11
Pleased to see you here.
I thought a lot of your talk was good, thanks, especially emphasising the point this is not fatigue to an audience where sone reduce it to that. but I didn't see why you criticised pace trial headlines but not the research itself - trudie chalder et al did a paper and press releases whereby supposedly the main thing is to reduce our fear of exercise. Also I don't see how you can work with Esther Crawley and mega, given that Crawley frequently does reduce our ghastly illness to fatigue, is totally irresponsible in the media and a nice guidelines criteria biobank isn't really a research priority is it? Maybe you feel best to be involved than not but I personally feel an alternative collaborative should be set up with people on the same page that this is systemic disease and bring in sympathetic journalists instead of the CFS bashing SMC reps. Etc.
I do thank you as someone recovered for caring enough to devote time to furthering progress. We need more healthy advocates who can actually travel and devote energy etc and ofcourse for you advocacy isn't in self interest so,
Hi Cinders66, thanks! you're welcome. Yeah I criticised the headlines (quite right) then made a meal of not criticising the trial (PACE) - i had been asked, as it was a talk on patient involvement, not to actually name trials I/we hated, as it's not a slagging match. I could have worded it better, eg. "This headline is shit, and whatever your opinion is on the trial behind it ..... (pauses and looks meanly around the room, maybe coughing/belching)..... this sort of headline isn't welcome amongst the patient community" .
MEGA does seem to be contentious, but we are exerting as much influence as we can - and if we weren't, and it got funded, yikes!!! Best to have some involvement than no involvement - which means no patient voice - no influence, which was something that, at the CMRC conference, was being pushed as a VERY. GOOD. THING. (and the opposite of us NOT being listened to when the likes of PACE came out, & CBT & GET were being approved by psychiatrists as the "best practice" for the illness ..... Even tho i was better by 2011, my heart sank & I knew this was all WRONG WRONG WRONG - but White, Chalder, Sharpe etc didn't listen to patients & did their own thing anyway ARGH!!!!!). Rest assured NO-ONE on MEGA (if funded of course) will NOT have properly defined PEM. All the PAG are passionately behind this. See the FAQ page here - item 3. http://www.megaresearch.me.uk/qanda/ All this is on hold right now as, as you know, we're not funded, so I'm not really doing anything these days
except this I suppose! (I'm semi retired). cheers & thanks for the reply
Phil
I think it will be important to check how this is defined. Jason has done work in a questionnaire for diagnosis and looked at its ease of use,
I suspect with Crawleys involvement they will use HADS but that should have been retired long ago (Coyne wrote a paper saying like Elvis it was dead long ago but still sighted). Also I worry about the Chadler Fatigue questionnaire as it is about the worst scale imaginable and should never be used - it even has two incompatible scoring systems.
trishrhymes
Senior Member
- Messages
- 2,158
If MEGA is to go ahead, it is vital that the questionnaires used are those used in international biomedical ME/CFS research, so international sharing of data and resources, and comparisons of outcomes can happen.
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
Hi, Phil/BS3,
I support your position there. The future for MEGA looks bleak, having been turned down by the two major funding options. I encouraged members to sign a protest against it but I did have mixed feelings when I heard it was turned down again. People had had the opportunity to point out all the flaws and at least one or two MEGA team members were clearly listening. More money for research is hard to say no to.
On the other hand the absurdity of the SMILE project (I will not call it a trial) reminds me of why I advised as I did.
Maybe we are all a bit wiser and in the end things will come right. It is good to have people playing things different ways because nobody ever knows quite which way is the most helpful and just a pantomime slanging match almost certainly isn't.
That says they'll define it themselves. Why not use an accepted definition which already exists? We've repeatedly seen that the MEGA lead generally omits PEM or redefines it inappropriately, while disingenuously claiming to use NICE criteria. Esther Crawley has completely destroyed any right she might have to get the benefit of the doubt in that regard.
Forbin
Senior Member
- Messages
- 966
OMG! Does this mean I'm in "SMILE denial" ?
OK, Hold on. Hold on. You know how to deal with this... "SPOT!"
Damn! Why isn't this working???
AndyPR
Senior Member
- Messages
- 2,516
Isn't it simpler to have a 'zero tolerance' stance? 'Playing things different ways' gives far too much latitude to EC and her cronies imo.
The problem with PEM is that we know what we experience but it is very easy to make it mean whatever you want. Anyone who digs the garden on Sunday experiences PEM on Monday.
What we have is much more subtle. I have seen it described as being able to lift a bag of potatoes over your head once, but unable to lift a spoon to your mouth five times, which sums it up for me.
Also the DELAY in experiencing symptoms was one of the hallmarks of original ME. Three days after I have done something (which I managed fine at the time) I can be bedridden. The CPET testing explains this delay as every day you do not get back to your original level until you have no more reserves. This is one of the reasons I think it is so vital. In fact while the immune studies are important it is this testing that should have priority and it amazes me that it doesn't get pushed all the time.
It has become apparent that our PEM is just an outward sign of a broken aerobic respiration system and THAT is the cardinal symptom of ME, one which cannot be diluted down by the BPS crowd.
Any involvement of Crawley and friends with MEGA automatically makes it a bad thing. They cannot understand proper science and they twist everything to serve their own purposes. This has been going on for decades and is unlikely to change now. We keep crediting them with good intentions because it is hard to believe that evidence will not make them change their minds but it has never happened. People get ME and think that all that is needed is proof and everything will be fine but it has never happened.
I predict that positive results for the rituximab studies or a less stressful test for a low anaerobic threshold that is easily administered will not change their minds. They will simply peel off anyone with a positive tests and then insist that everyone else has CFS and continue with their "treatments"
What we have is much more subtle. I have seen it described as being able to lift a bag of potatoes over your head once, but unable to lift a spoon to your mouth five times, which sums it up for me.
Also the DELAY in experiencing symptoms was one of the hallmarks of original ME. Three days after I have done something (which I managed fine at the time) I can be bedridden. The CPET testing explains this delay as every day you do not get back to your original level until you have no more reserves. This is one of the reasons I think it is so vital. In fact while the immune studies are important it is this testing that should have priority and it amazes me that it doesn't get pushed all the time.
It has become apparent that our PEM is just an outward sign of a broken aerobic respiration system and THAT is the cardinal symptom of ME, one which cannot be diluted down by the BPS crowd.
Any involvement of Crawley and friends with MEGA automatically makes it a bad thing. They cannot understand proper science and they twist everything to serve their own purposes. This has been going on for decades and is unlikely to change now. We keep crediting them with good intentions because it is hard to believe that evidence will not make them change their minds but it has never happened. People get ME and think that all that is needed is proof and everything will be fine but it has never happened.
I predict that positive results for the rituximab studies or a less stressful test for a low anaerobic threshold that is easily administered will not change their minds. They will simply peel off anyone with a positive tests and then insist that everyone else has CFS and continue with their "treatments"
Jonathan Edwards
"Gibberish"
- Messages
- 5,256
It may be simpler but what often matters is keeping lines of communication open.
No, you have it all wrong. The magic word is TOPS!
Or was it POTS?
It is all very confusing sometimes. Perhaps Phil Parker could enlighten us.
I completely agree... it's naivety to even ponder that the collective 'BPS mind' can be changed by reason, because if this was so they would never have embarked upon the careers they have chosen.