We are all constantly fighting a rearguard action to defend ourselves against poorly conducted 'research' and 'therapies' that claim to cure ME/CFS, from the Wessley school it's all in your head/doesn't matter what virus it was paradigm, Gupta's amygdala reprogramming through to the Lightning process cures anything.
While its easy to criticise these studies/therapies, we all understandably end up depressed, frustrated and constantly on the defensive against those who either claim that there is no biological basis to ME/CFS or those who claim, regardless of the biological underpinnings, that their therapy can cure us - 100%
Rather than constantly fighting a rearguard action, can't we and/or advocacy groups invite these people to prove their therapies to us.
To PROVE themselves we demand that any studies meet the following criteria or are dismissed out of hand as worthless :
Feel free to add to or change this as you wish.
We do NOT have to sit back and patiently 'take it' while poorly conducted or biased research is used as a weapon to deny us proper treatment. The onus is not on us to defend ourselves but on others to PROVE themselves to us.
If they can't do so against the above (or any other criteria we may wish to use) then we dismiss them out of hand.
PS - I'm aware that these criteria, as they stand, could rule out much valuable and well-intended research.
While its easy to criticise these studies/therapies, we all understandably end up depressed, frustrated and constantly on the defensive against those who either claim that there is no biological basis to ME/CFS or those who claim, regardless of the biological underpinnings, that their therapy can cure us - 100%
Rather than constantly fighting a rearguard action, can't we and/or advocacy groups invite these people to prove their therapies to us.
To PROVE themselves we demand that any studies meet the following criteria or are dismissed out of hand as worthless :
- All research/therapies should recruit ONLY from a patient cohort clearly shown to fully meet the Canadian criteria for ME/CFS. Cost and/or lack of availiability of such a cohort is no excuse;
- Anyone with a primary psychological diagnosis should be excluded;
- Any study should be able to set out in detail how the proposed theory explains the range of symptoms and physiological findings consistently found in ME/CFS; it is not enough to waffle about deconditioning, mistaken beliefs, oversensitive amygdalae etc;
- Any participant should have the aims and underlying theory fully explained to them before consenting to participate;
- Participants should not be barred from participation because they cannot 'sign up' to the underlying theory and must not be barred from reporting negative results;
- Any study should have a sufficient sample size to enable to results to be generalised to the ME/CFS population;
- Measures used should fully reflect the full range of symptoms experienced by those with ME/CFS;
- Measures of performance/activity should not rely solely on subjective responses but must be accompanied by objective measures such as actimeter data/hours worked etc;
- Given the fluctuating nature of the illness, any studies should have a longtitudinal element to allow follow up measures to be taken to establish the permanancy of any improvements;
- Papers are required to be published in peer reviewed journals stating how they meet the above criteria.
Feel free to add to or change this as you wish.
We do NOT have to sit back and patiently 'take it' while poorly conducted or biased research is used as a weapon to deny us proper treatment. The onus is not on us to defend ourselves but on others to PROVE themselves to us.
If they can't do so against the above (or any other criteria we may wish to use) then we dismiss them out of hand.
PS - I'm aware that these criteria, as they stand, could rule out much valuable and well-intended research.
