Prove it !

[Marco]

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 :

• 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.

 

[Marco]

On reflection, is it beyond us/advocacy organsiations to draw up an International Criteria for Research into ME/CFS?

Yes, strict criteria could rule out a lot of research for various reasons. But at least what research that was conducted would be narrowly focused where it needs to be and we would avoid all the poorly conducted, contradictory and downright dishonest 'research' that bedevils ME/CFS.

IF, a psychological theory/therapy meets these criteria and shows positive results, I'm sure we would all be open to giving it proper consideration. If research, whether psycholgical or not, fails to meet the criteria, then they can publish all they like, just NOT under the banner of ME/CFS.

 

[lansbergen]

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.

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;

If research, whether psycholgical or not, fails to meet the criteria, then they can publish all they like, just NOT under the banner of ME/CFS.

That would be great.

 

[Gerwyn]

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 :

• 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.

three cheers i dont think not using the other crtiterea will rule out anything useful at all. they are clearly not fit for purpose

 

[leelaplay]

Brilliant Marco!

Why not mail this to all the good ME/CFS organizations. Some may be interested in having a "How to evaluate Research" page or be able to run with it in some way.

 

[PoetInSF]

... 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%

Just who are these people? Wessley? Reeves? Neither of them claim no biological basis or 100% cure. Gupta? Teitelbaum? There are peddlers for all kinds of diseases. Stress is bad for CFS, we all know that. I'd focus on improving QOL if I had time to rail against imaginary enemies.

 

[Gerwyn]

Just who are these people? Wessley? Reeves? Neither of them claim no biological basis or 100% cure. Gupta? Teitelbaum? There are peddlers for all kinds of diseases. Stress is bad for CFS, we all know that. I'd focus on improving QOL if I had time to rail against imaginary enemies.

If you think that these are imaginary enemies then you live in a different world to me.Stress is bad for all number of chronic debilitating illnesses and these illnesses cause stress. I am glad that you call them peddlars not only are they peddlars of unproven treatments but also of misdiagnoses.There is a very high likelyhood that patients diagnosed as having CFS by these people have in fact underlying psychological problems causing their chronic fatigue.The only way of seperating patients with fatigue of psychological origin from those with ME is post exhertional malaise.Without that feature patients are highly unlikely to have Me/cfs in the first place

 

[Marco]

Just who are these people? Wessley? Reeves? Neither of them claim no biological basis or 100% cure. Gupta? Teitelbaum? There are peddlers for all kinds of diseases. Stress is bad for CFS, we all know that. I'd focus on improving QOL if I had time to rail against imaginary enemies.

Well something must have got lost in translation between Wessley and Reeves' personal beliefs and the CBT and GET regimes they propose which are rooted in the central theory that patients symptoms are caused by abnormal illness beliefs and the prescription to continuously increase activity regardless of any negative symptoms. If they believe there is an ongoing pathology then the therapies they recommend are in complete contradiction to this belief and unethical.

As for Gupta I enjoyed his theory, he at least tries to describe mechianisms, but he certainly doesn't advertise his programme as 'it might help some people a little'. Which brings us on to the Lightning Process.

I don't necesarily regard all these people as 'enemies', but they certainly aren't helping move things forward. None of which negates the central point that if there is value in their theories and therapies then let them prove it with scientifically robust studies on a proper ME/CFS cohort.

 

[justinreilly]

Brilliant Marco!

Why not mail this to all the good ME/CFS organizations. Some may be interested in having a "How to evaluate Research" page or be able to run with it in some way.

Agreed!

Does anyone know if IACFSME has guidelines/ criteria for research like this? If not they should and this should be submitted to them. If the above list or one similar were adopted by every major ME org, then it would have some good traction. Excellent idea!

 

[jace]

Marco, that is brilliant thinking. I third the suggestion that you mail it to all ME/CFS organisations. Well done!

 

[biophile]

I agree, Marco's criteria are excellent. It must be a very poor state of affairs indeed when (after 20+ years of being shafted) patient communities themselves have to create guidelines for proper research!

 

[justinreilly]

I agree, Marco's criteria are excellent. It must be a very poor state of affairs indeed when (after 20+ years of being shafted) patient communities themselves have to create guidelines for proper research!

Agreed. It's stultifying.

 

[starryeyes]

I agree, Marco's criteria are excellent. It must be a very poor state of affairs indeed when (after 20+ years of being shafted) patient communities themselves have to create guidelines for proper research!

Right on biopsychobabble, and I love your name! Welcome to Phoenix Rising. :Retro smile:

 

[Mark]

Brilliant Marco!

Only one point really:

to enable to results

Otherwise, perfect as far as I can see. :Retro smile:

It must be a very poor state of affairs indeed when (after 20+ years of being shafted) patient communities themselves have to create guidelines for proper research!

It certainly is a dramatically poor state of affairs, that we know! However I am also excited by the idea of patients taking all this work out of their hands. Can anyone prove an alternative approach to theirs for the treatment of people who don't have ME? If we could find something 'even' more effective for those people than CBT, that too might be helpful for both ME and CFS. Not to mention NHS. Lots of very exciting research going on at the moment...

 

[Mark]

Just who are these people? Wessley? Reeves? Neither of them claim no biological basis or 100% cure. Gupta? Teitelbaum?

100% belief is a property within certain arenas. Denial of biology also. Doesn't have to be stated explicitly if believed. Never is, by clever people.

There are peddlers for all kinds of diseases.

Indeed there are. Far too many. Cut them all out. Offer free alternatives.

 

[Marco]

Thank you for the postive responses.

If its agreed that the corrected criteria are a good place to start :

What would be the best way to approach the charities and advocacy groups?

Would they respond better to an individual approach or as 'members of the forum'?

 

[Gerwyn]

Thank you for the postive responses.

If its agreed that the corrected criteria are a good place to start :

What would be the best way to approach the charities and advocacy groups?

Would they respond better to an individual approach or as 'members of the forum'?

invest in me already push the ccc sorry dont know about others but richard at invest is very helpful.perhaps he could point you in the right direction? just a suggestion.