charles shepherd
Senior Member
- Messages
- 2,239
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.
T
The researchers used mediation analysis to identify the factors—such as physical fitness (as measured by a walking test) and beliefs about activity—through which CBT and GET achieved their beneficial effects on fatigue and overall physical function. These potential mediating factors were measured at 12 weeks, halfway through the patients’ 24 weeks of treatment, except for the walking test, which was assessed at 24 weeks.
Combining a cacophony of vague symptoms, with even less in the way of overt clinical signs is, I suppose, one way of achieving fame, by having one's name attached to a new disease or syndrome?
What is the incidence and prevalence of so-called chronic fatigue syndrome (CFS)/Myalgic Encehaphlo-myelitis(ME) in less developed countries? Does it actually exist in less industrial societies. If there is a significant difference in incidence and prevalence, then why?
Could it be a genetic variation, is it in the diet, are there certain toxins present in the UK for example, that may not be present, for example, in Tanzania?
Or are we looking at a peculiarly first world problem, symptomatic of the toxicities of their societies, where stress has become the order of the day, social isolation, a disconnect from where we have all come i.e. the land, the soil, the trees, the environment, and destruction of the extended society? And this has led to a society swamped by mental health issues, possibly masquerading as CFS/ME.
Exercise, out-door activities, and reintroduction into the natural environment may well be the treatment society requires to prevent it from self-destruction. Oh, and the odd anti-depressant / mood stabiliser.
The ME Association believes that energy management, which involves both physical and mental activity, is the most important aspect of managing ME/CFS.
Consequently, we welcome research which aims to improve our knowledge of how this can best be achieved.
I pity the PWME who are that man's patients. Where has he been all his life? How do people as ignorant and complacent as that manage to stay as doctors for more than a day or two? The man needs to be shown the door with a reassuring pat on the head and a bunch of "mood stabilizers". If we talked unsubstantiated mumbo jumbo like that we'd be done for, and yet a doctor seemingly is free to do so.response
I know how to manage my limited energy already, as I'm sure most suffers do. .
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....
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.
That sounds perfectly reasonable.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.
I thought the evidence was already discovered in the Pace trial?
I agree we do need proper scientific research into this, I'm also one who has progressively increased my physical activity level. However I don't for one second think these people will be able to come up with the answers by doing more of the same type of psychological research they do.
By saying you welcome more research in this area, you're giving the green light to more psychological rubbish.
What you should be doing is asking for scientific research on people like you and I, proper tests like brain imagining, exercise testing with VO2 take up, lactate levels, and all the other testing that shows markers of abnormality and looking very carefully at how and why these improvements have taken place.
That sounds perfectly reasonable.
Could I ask, have there been any research proposals put forward for large, robust and replicated clinical trials into the efficacy of pacing? If so has there been any corresponding willingness either expressed or intimated by the relevant funding bodies to finance such trials?
Reply
There haven't been any large scale clinical trials carried out and published that have used pacing (as we understand it) that can be used in comparison to the Pace trial. This is a problem.
The second problem is finding a group of clinicians who use this type of pacing and want to carry out a clinical trial
The third problem is funding. This sort of trial is extremely expensive to do and is well outside the remit of research funding charities here in the UK.
I know from previous membership of the Medical Research Council Expert Group on ME/CFS that the MRC would be very willing to seriously consider such a proposal. The problem (and I know I keep using this word!) is that we don't currently have a hospital based group of acceptable clinicians who want to do a trial of pacing.
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....