The Shocking way Kings College London recruit for research

[Min]

http://www.gumtree.com/p/community/do-you-have-me-chronic-fatigue/1064991922

This is where Simon Wessely works. The hospital is advertising for recruits for their ME/CFS 'research' on the free classified adverts site Gumtree, used to find rented accommodation, cars etc.


Presumably the recruits will be self selecting, so goodness knows what will be wrong with them, if anything. They will also have to be well enough to speak on the phone for 15 minutes, which rules many genuine myalgic encephalomyelitis patients out.


Is so-called research on any other illnesses conducted in such a flippant way?

 

[Min]

Do you have ME/ CFS?

This is an under-researched condition and poorly understood.

A group of researchers at King's College London are conducting research into this condition, specifically into the attention and concentration difficulties that many people report.

We are conducting short telephone interviews with people with ME/CFS. Interviews take about 15 mins and will ask about your experiences of the condition.

Unfortunately there is no payment for taking part.

If you are still interested, would like to take part or just find out more please get in touch.

 

[A.B.]

There is another ad: http://www.gumtree.com/p/community/...rt-in-research-into-this-condition/1062442927

Interviews with People with Chronic Fatigue Syndrome/ME
King’s College London

About the study
This research is interested in learning more about the experiences of people with CFS/ME. If you have CFS/ME and are at least 18 years old we would like to invite you to take part in a short interview about your experiences if the condition. Interviews are expected to take approximately 20 minutes and can be conducted over the phone or face to face at a time and place convenient to you. You will also be asked to rate a list of words and scenarios in their relevance to CFS/ME.

You can take part in this study if:
-you have a diagnosis of CFS/ME
-you are at least 18 years old

Who has reviewed this study?
This study has been reviewed and given favourable opinion by the NHS Berkshire Research Ethics Committee.

 

[alex3619]

If this were a preamble to a big study, in which potential patients were recruited and appropriately diagnosed I would have little problem with it.

Given the misunderstanding surrounding CFS and ME I would expect that their patient cohort will wind up a nonsense cohort if there is no appropriate screening. Sadly, at Kings in particular, appropriate diagnostic investigation would be very unlikely even if they tried to do it, tied as they are to NICE guidelines, the Oxford definition of CFS, and a particular school of psychogenic medicine and experimental design.

What can you learn from a nonsense cohort? Very little of substance. A general survey of the population would be better, at least you would then have a better idea of what most people are thinking. It could however be argued that this is the same thing but in the population of diagnosed "CFS" patients.

For even a token attempt at rigor you would expect that would recruit in medical practices with bone fide Oxford defined CFS patients.

Given that in the UK many "experts" conflate ME with idiopathic chronic fatigue, an entrenched view, this is not an unexpected development. Maybe they have read our repeated criticism that their opinions on what we think are rampant speculation, and so they are trying to find confirmatory evidence that they are right by looking in vaguely related cohorts?

 

[SilverbladeTE]

Alex
that is probably exactly what they want!

this is about

1) keep appearing to be doing something, so, keep "deserving" funding
this type of corruption is endemic of course but also in research not just say, road repairs

2) lets them keep "charge" of situation so they can warp it for their own benefit
Fear Uncertainty Doubt
just like tobacco companies etc, this kind of crap is a smokescreen to keep their asses safe

 

[Ambrosia_angel]

This doesn't even shock me...

Very typical of them.

 

[taniaaust1]

A group of researchers at King's College London are conducting research into this condition, specifically into the attention and concentration difficulties that many people report.
We are conducting short telephone interviews with people with ME/CFS. Interviews take about 15 mins and will ask about your experiences of the condition.

If the study had the focus on something other then being "specifically into the attention and concentration difficulties".. it wouldnt be so bad. So how suitable is this selection process when there may be a large percent of CFS patients who's concentration and attention etc may be too poor to be doing things like browing gumtree reading all the ads?

It takes quite a bit of attention and concentration to be browsing throu ads on gumtree and to even see this ad. How many of us have the health to go browing it like most normal people do? So this will select CFS patients who arent as bad off in the very areas they are proposing to study! (I wonder if that is their plan in the first place? surely they should be aware that the ones with less focus and concentation difficulties may be browing gum tree... or are they that dumb?).

I liken what they are doing to be just like at a loud concert, recruiting for a study for noise intollerance and then go on to publish these results into its severity etc to apply to all wth noise intollerence.

Who is funding this study? Maybe people should point out to where its being funded from this issue which is a big one. Is it gov funded? It is seriously flawed before it even starts and should be pulled.

Is there some body out there which monitors scientific studies? to which people could complain to about what is going to be a badly flawed study?

 

[alex3619]

You make a good point @taniaaust1 , the nature of the adds would make it likely that any ME patients would never see it, and neither would any severe CFS patient. So they get a mix of idiopathic chronic fatigue and mild CFS. Hardly a useful sample.

 

[Min]

Curiouser and curiouser... Both ads have been taken down, perhaps because people with geniune myalgic encephalomyelitis rather than people feeling a bit tired noticed them.


At least we gained a brief insight into their scientific research methods.

 

[alex3619]

Curiouser and curiouser... Both ads have been taken down, perhaps because people with geniune myalgic encephalomyelitis rather than people feeling a bit tired noticed them.


At least we gained a brief insight into their scientific research methods flawed methodology.

I made a slight alteration.

 

[alex3619]

This raises a point. Since an average ME patient would be unlikely to find such an advert, who would? Advocates. I wonder if that means something. We regularly run keyword searches.

 

[maryb]

@alex3619

Yes I agree we should do that, the psychs must run searches regularly to arrive on here so often, make no mistake about that, glad we give them so much scientific info, its probably the only opportunity they get to see proper stuff, well that is if they can understand it...........

 

[Min]

Kings run their own fatigue clinic, so this method of selecting patients for a scientific study is bizarre.


How did they receive approval from the NHS Berkshire Research Ethics Committee to recruit participants via Gumtree?

 

[Ambrosia_angel]

This doesn't even come across as a real ad. Any possibility that it could be some sort of sick joke maybe? Kings college runs one of the biggest fatigue clinics in the country so why would they go on gumtree to find participants. How many ME patients would even type CFS/ME on gumtree.

 

[Min]

http://www.kcl.ac.uk/innovation/groups/projects/cfs/research.aspx

Their other research is hardly impressive.

Whilst other reseachers are trying to unravel the pathology of myalgic encephalomyelitis (mainly funded by the patients themselves in the UK)Kings College are researching people who may or may not think they have the neurological illness, and who stumbled across an ad on Gumtree, by asking them, over the phone, to rate words and scenarios related to CFS?

Presumably they can then interpret the results any way they wish.

 

[alex3619]

This doesn't even come across as a real ad. Any possibility that it could be some sort of sick joke maybe? Kings college runs one of the biggest fatigue clinics in the country so why would they go on gumtree to find participants. How many ME patients would even type CFS/ME on gumtree.

I have been wondering about that. Is this a hoax? Its so bizarre it might be.

 

[Ambrosia_angel]

The ad has been removed now. Very suspicious... and inappropriate of the person who posted it. Not funny at all. I guess we won't ever know whether it was someone associated with the hospital or someone really bored looking for a reaction. Either way it's not good.

 

[Min]

The ad has been removed now. Very suspicious... and inappropriate of the person who posted it. Not funny at all. I guess we won't ever know whether it was someone associated with the hospital or someone really bored looking for a reaction. Either way it's not good.

You are assuming, without evidence, that it was a hoax.


Given the way that research funding into myalgic encephalomyelitis in the UK has for the last 30 years been
diverted into studying the psychology of vaguely defined fatigue, I can well believe that participants into such useless studies are recruited in this manner.

 

[Ambrosia_angel]

You are assuming, without evidence, that it was a hoax.


Given the way that research funding into myalgic encephalomyelitis in the UK has for the last 30 years been
diverted into studying the psychology of vaguely defined fatigue, I can well believe that participants into such useless studies are recruited in this manner.

I didn't assume it was a hoax.... I didn't use the word hoax in any of my previous posts either. Where has that come from? :s

 

[Min]

Alex asked if it was a hoax, you said it might be someone bored looking for a reaction (I.e. a hoax).