BBC - Chronic fatigue syndrome on rise among 16-year-olds

[K22]

With any other condition these researchers would have been able to obtain funding to do a proper study and actually investigate these cases clinically to get a more realistic estimate.

Alas, all we have is sloppy vague questionnaire based 'research'.

Well they got MRC funding. People like EC just do superficial research anyway.

 

[Valentijn]

I'm not a fan of AfME, but found this bit quite interesting:

She [Crawley] said experts still did not know exactly why or how the condition is triggered, but research showed it could be successfully treated with cognitive behavioural therapy (CBT) in young people.

Sonya Chowdhury, chief executive of Action for ME, said the study pointed to the need for more effective treatments.

It would seem that Chowdhury is disagreeing with Crawley's happy promise of a universal cure if we just send her all of the fatigued kiddies. Progress?

 

[worldbackwards]

Perhaps they've all got Persistent Refusal Syndrome. I hear it can be very difficult to tell the difference. Though I'm sure Dr. Crawley will get to the bottom of it.

 

[Esther12]

What percentage of Crawley's recent papers have really just been arguing "Give Me £££"? It seems like most are utterly worthless for moving our understanding foreward, and are only really political documents.

Does this study show increased prevalence? Compared to when?

What a collection of people in the press release.

 

[TeresaBCN]

http://www.westerndailypress.co.uk/Yuppie-flu-taking-toll-teens/story-28594735-detail/story.html

The headline has now been changed to ' ...ME...is not yuppie flu' but the first line in the article starts - Yuppie flu affects 1 in 50....

What incompetence!

 

[Yogi]

Even by the standards of the psychobabblers this is utterly ridiculous - they were diagnosed without a doctor and via their mothers completing a questionnaire??

How on earth can anyone with a single brain cell equate ME / CFS to chronic fatigue to persistent exhaustion?

They are deliberately trying to conflate these disorders to muddy the water and so they can do such dodgy research and that real biomedical research is .

Esther Crawley is co-chair of the CMRC Collabrative. This demonstrates again that no good can come out of the Collabrative with her in the leadership and it is to placate the patients that something is being done .

It was doctors such as SW (involved from 1980s) and some journos who came up with 'yuppie flu' in the 1980s. Now they claim CFS is more prevalent in poorer class of society. They are contradicting themselves again. I suspect that as more well educated and articulate people are challenging their fraudulent research (such as PACE) it is becoming more difficult to manipulate such research participants. Therefore they are now trying to mis-diagnose in this class so that they can use them for their research subjects. I suspected their strategy would be polluting the research criteria with subjects who are easier to manipulate. This is why after PACE trial Esther Crawley is important to the junk science as she has access to children as a paediatrician.

I recall they also did some junk research recently that CFS was more prevalent in ethnic minorities and those with poor english. Given middle class people with good grasp of english will be difficult to manipulate and are now challenging this junk and fraudulent science in increasing numbers then these are the best subjects for their research going forward along with children.

It is rather worrying.

AFME and AYME
What I really do not understand is why AFME and AYME are colluding with these people? Effectively these two charities give them cover and approval for doing this research. Everyone should boycott AFME and AYME. However I understand they probably get some money from the government. I would love to know more about AFME and AYME's accounts. I wonder if their leaders are getting any other corrupt payments for operating as supposed " ME charities" against ME patients interests and in collusion with these researchers? It just does not make sense for these charities to act in this way against ME patients.

 

[chipmunk1]

Perhaps they've all got Persistent Refusal Syndrome. I hear it can be very difficult to tell the difference. Though I'm sure Dr. Crawley will get to the bottom of it.

i think i understand how it works.

They hate the diagnosis CFS as they think it's all in the mind and instead a psych condition should be diagnosed.

They realise that their patients will run away from them if they diagnose a psych condition and refuse to acknowledge the CFS diagnosis.

The solution: Accept the CFS diagnosis and treat with CBT.

If they don't improve tell them they successfully treated the condition but what remains is a psych condition that needs to be treated. ---> successfully switched them to psych diagnosis.

That way they can get rid off a diagnosis they don't like and do much needed behavioural therapy.

If they do improve they are cured and lose their diagnosis as well and stop believing that they have CFS.

In either case they can take away the CFS diagnosis from the patient.

 

[sarah darwins]

Esther Crawley is co-chair of the CMRC Collabrative

That does does really bother me. With her as co-chair, it's hard to see anything really different coming out of there.

 

[Sidereal]

Everyone should boycott AFME and AYME.

Ideally these organisations should cease to exist. Failing that, they would rename themselves and drop ME from their name because their actions are really damaging to those of us with actual ME.

 

[Cheshire]

If you put all the facts together, Esther Crawley is probably the one able to cause the more damage (really poor studies, status of co-chair of the CMRC, part of the death threats campaign, project of studying the "Lightning Process©", rediagnosis of patients who do not improve). The worst is that she works with the most vulnerable population, children.


@charles shepherd I really appreciate the part you are taking into the CMRC process, and I think it is very important that your voice can be heard. But I'm really desperate that any of the money spent will bring anything good. I really don't see how the CMRC can go in the right direction to study the biomedical basis of ME when co-chaired by someone who thinks 2% of adolescents have it and it can be "cured" by stopping playing video games before going to bed.


PS/ This BS masterpiece is now readable "en français dans le texte". Lucky us. https://www.santelog.com/news/sante...onique-il-n-epargne-pas-les-enfants_15253.htm (we are hopefully spared the reference to the Yuppie Flue, which in the context of children is even more insulting).

 

[Chrisb]

co-chaired by someone who thinks 2% of adolescents have it and it can be "cured" by stopping playing video games before going to bed.

It seems entirely plausible that some fatigued children can be made to feel less fatigued by stopping them playing video games before, or after, going to bed. Surely the point is that children "cured" in this way are unlikely ever to have had ME. It might even be regarded as a diagnostic marker.

 

[Snowdrop]

How AfME gets so much popular support is beyond my reckoning.

 

[2kidswithME]

Seriously poor research! I would like to know what research she's referring to that says teenagers can be cured by CBT? I've been following this illness for 10 years in order to support my children who had it, and the evidence for CBT helping children recover is about as convincing as the evidence of it helping adults.

 

[A.B.]

Ideally these organisations should cease to exist. Failing that, they would rename themselves and drop ME from their name because their actions are really damaging to those of us with actual ME.

If researchers want to study the complaint of fatigue in adolescents they can do so. If a charity wants to support adolescents with the complaint of fatigue that's fine.

Equating the complaint of fatigue with ME or CFS is just wrong. Lumping people that can't function normally due to a variety of debilitating symptoms together with people that might just be depressed due to breaking up with their boyfriend is absurd. We don't know what any of these adolescents has because no effort was made to find out. What's the point of this study, besides being good for Crawley's career?

 

[charles shepherd]

If you put all the facts together, Esther Crawley is probably the one able to cause the more damage (really poor studies, status of co-chair of the CMRC, part of the death threats campaign, project of studying the "Lightning Process©", rediagnosis of patients who do not improve). The worst is that she works with the most vulnerable population, children.


@charles shepherd I really appreciate the part you are taking into the CMRC process, and I think it is very important that your voice can be heard. But I'm really desperate that any of the money spent will bring anything good. I really don't see how the CMRC can go in the right direction to study the biomedical basis of ME when co-chaired by someone who thinks 2% of adolescents have it and it can be "cured" by stopping playing video games before going to bed.


PS/ This BS masterpiece is now readable "en français dans le texte". Lucky us. https://www.santelog.com/news/sante...onique-il-n-epargne-pas-les-enfants_15253.htm (we are hopefully spared the reference to the Yuppie Flue, which in the context of children is even more insulting).

You may have seen these notes on the CMRC before but I'll post them again of the benefit of people who have not seen them

Re: But I'm really desperate that any of the money spent will bring anything good.

I ought to stress that the CMRC does not have any funding or staff and does not/will not be funding any ME/CFS research - certainly in the foreseeable future

A few quick points that people may like to bear in mind when discussing the UK Research Collaborative (CMRC):

1 Like many health professional initiatives in the area of ME/CFS, this involves a group of people who are adding a significant amount of voluntary work to an already very full workload. The Collaborative has no external funding and no permanent staff. If you add up the time taken for meetings, conference attendance and homework, in my case this means adding at least another 7 working days to a voluntary MEA etc workload that is already in excess of 50 hours a week. So there is a limit to what we can achieve with the human and financial resources available.

2 There are a number of positive developments that are taking place/have taken place as a result of the work we have been doing over the past 3 years:

3 A two day annual research conference has been established (which does take a lot of time to organise) that is almost exclusively concerned with biomedical research. The conference is open to any researcher who wishes to attend and we have managed to bring in an excellent mix of UK based and overseas researchers who are already involved in ME/CFS research as well as researchers who are new to the subject. In addition, we have a growing number of researchers from overseas, PhD students and medical students. There is no other annual ME/CFS research conference taking place anywhere else in the world that is organised on this basis.

4 We are progressively bringing in major research funding organisations into the collaborative - recent examples include Arthritis Research UK and The Welcome Trust - and have established firm links with all the major government research funders (eg MRC, NIHR)

5 We are now working on Professor Stephen Holgate's Grand Challenge. This will involve the collection of a vast amount of clinical data and biological samples from over 10,000 people with ME/CFS here in the UK. A wide range of experts in epidemiology, genomics, metabolomics, proteomics etc have accepted the inivitation to attend the RC Workshop in April. This will then proceed to preparing what is possibly the largest ever reseach funding application in the history of ME/CFS being made

6 As with all collaboratives there are differences of opinion relating to almost everything we discuss and I clearly have disagreements relating to how to deal with criticism of research that involves another member of the collaborative and the role of the SMC. But these are relatively minor issues and only take up a very small proprtion of our time (the discussion on the new Code of Conduct took about 10 minutes at rhe Board meeting last week)

7 Professor Stephen Holgate has played a crucial role in setting up the CMRC - partly based on a research collaborative that he set up for lung disease, which is his speciality. Anyone who has met and spoken with Stephen will know that he is a very caring and compassionate physician who reallly wants to get to the bottom of what is causing this illness and to find effective forms of treatment. There aren't any other doctors around who have real influence in high places when it comes to biomedical research into ME/CFS and who can succeed in binging in colleagues like Professor Hugh Perry (Chair of MRC Neurosciences Board and a Professor of Experimental Pathology) into a group like this.

8 So, in my opinion, the positives associated with setting up the CMRC far outweigh any disadvantages

9 Would research into ME/CFS here in the UK really be in a better position if, as some people want, the CMRC packed up, or some of the charity members left? I think not…..

Dr Charles Shepherd

 

[user9876]

If you put all the facts together, Esther Crawley is probably the one able to cause the more damage (really poor studies, status of co-chair of the CMRC, part of the death threats campaign, project of studying the "Lightning Process©", rediagnosis of patients who do not improve). The worst is that she works with the most vulnerable population, children.

Don't forget that Crawley equated people raising ethical concerns about her child experimentation (Smile trial) with harassment. Personally, I think people should be encouraged to raise any ethical concerns they have about child experimentation. As far as I know she never answered the basic question of why do this on children with any evidence based approach. She basically said CFS in children is different. However, looking at things like the Norwegian study which had a double peak of prevalence one in younger people then that peak didn't just include children.

But maybe the CMRC is a good thing in that if Crawley is doing that she has less time to see patients - From personal experience I worry about her as a doctor.

 

[Esther12]

Like many health professional initiatives in the area of ME/CFS, this involves a group of people who are adding a significant amount of voluntary work to an already very full workload.

It would be great if we could get Crawley to volunteer less of her time to making life worse for us.

 

[Snowdrop]

I found C Shepherd's letter (post #10) to be a bit understated and lacking teeth Ditto S Chowdhury's comment Valentijn's (post #22) that better tx is needed.

It's easy for me to say I suppose. But if this is ever going to end people like EC need to be seriously called out. This group will continue to adapt and morph in order to continue their nonsense (since their careers are locked into the view) twisting everything to fit the psych paradigm.

I have started to think that the caution is because of a climate that has been contrived to engender fear by those who would stand to loose if people where free to speak out--in which case the UK has bigger issues for it's citizen's in general than just for PwME.

The bottom line is EC should not be allowed to get away with equating persistent fatigue with ME. I think our referring to it as persistent fatigue to decouple it from chronic fatigue and spreading that message might help a little to separate the two in people's mind. Ie chronic fatigue gets immediately associated with ME/cfs but persistent fatigue is just that.

EC and her colleagues do not play nice. Timid words and not rocking the boat just won't cut it. This is a difficult situation then because for those who advocate for us making progress likely will come at some personal cost.

 

[user9876]

This is a really shockingly poor paper I am surprised that peer reviewers didn't just cry when presented with this. I really cannot understand how they could possibly get to publish this work.

Children with CFS had higher levels of psychological problems, life difficulties and school
absence (Table 3).

May be this sums up the paper. They take children who parents say their child was "feeling tired or felt she/he had no energy” which resulted in not doing stuff and then label them as having CFS. They then correlate this with "psychological problems, life difficulties and school absence". If a teenager was depressed then they would seem to fit the "CFS" category and then have "psychological problems".

After imputation, depressive symptoms (SMFQ score ≥11) were reportedby 67.4% of children with CFS, compared to 15.3% in those without CFS, and children with CFS had 11-fold higher odds of depressive symptoms (OR 11.0 (5.92, 20.4)), compared with children without CFS (Table 3). The

So basically they stick a CFS label on teenagers with fatigue and the accredit symptoms to CFS.

Or they do give an alternative view

The imputed prevalence of CFS of ≥3 and ≥6 months’
13
duration, if all children with depressive symptoms 287 were classified as not having CFS, was
288 0.90% (0.60%, 1.20%) and 0.60% (0.37%, 0.84%), respectively

So those are possibly better figures but would still cover other issues/diseases

Of course social problems could lead to a level of fatigue or statement of such. Or perhaps teenagers say 'i'm too tired for that' when actually they are just not interested in their old hobby or sporting activity but don't want to say that to their parents who were keen on it.

 

[Cheshire]

Thanks for your answer @charles shepherd

9 Would research into ME/CFS here in the UK really be in a better position if, as some people want, the CMRC packed up, or some of the charity members left? I think not…..

My post wasn't meant to put into question your role in the CMRC, as I said I think it's important that your voice is heard. And I know you spend a lot of your time advocating for us, and I'm really deeply thankfull for that.

But the study lead by EC is so bad, be it in term of criteria, or method of diagnosis and so on... She has no understanding at all of what ME CFS is, and no will either to understand. She's only pushing her agenda and selfishly promoting her career, not preocupied at all by the consequences of her actions. The gap between the proponents of Oxford CFS curable with CBT and GET and those who think MECFS is a serious organic disease is so huge I don't see how it can lead to something.