• 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 (FM), 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.

Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)

Messages
1,446
.
http://www.margaretwilliams.me/2016/bbc-reply-mar-nov21.pdf
Carol Rubra, BBC News, in response to the Countess of Mar's letter:
“Finally I would like to reassure you about the relations between the Science Media Centre and BBC News. The SMC is a valuable resource for advice on matters requiring expert understanding but it does not condition our journalism. BBC health and Science journalists always check directly with the researchers involved in the reports they cover. Their journalism is independent and impartial, in keeping with the BBC’s Editorial guidelines”


~~~~~~~~~~~~~~~~



http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf

Review of the first three years of the mental health research function at the Science Media Centre

'….. Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette's first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award'


Page 12:

Supporting experts targeted by extremists

‘We have also been involved in supporting experts who have found themselves being targeted by individuals or groups who do not like their research. This has been particularly important in the case of psychiatrists and psychologists working on chronic fatigue syndrome/ME. These researchers have found themselves in the firing line from a small group of extremists who are opposed to psychiatrists or psychologists doing research on chronic fatigue syndrome/ME.

The SMC ran a press briefing on the first findings from the PACE trial, and supported

The researchers involved throughout this process, for example, by organising media training in collaboration with the MRC. When we became aware of the level of intimidation researchers were experiencing we brought together key parties for a brainstorm to discuss what could be done to aid researchers. At this event it was agreed that the harassed experts should speak out publically about the harassment they were experiencing. As a result the BBC Radio 4 Today programme ran an exposé on the piece (http://www.bbc.co.uk/news/science-environment-14326514) and a number of outlets followed the story including the Observer (https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis) and the Daily Mail (http://www.dailymail.co.uk/health/a...reats-investigating-psychological-causes.html).



Page 14

Seizing the agenda

As well as breaking stories of new research and responding to mental health in the news, the SMC has also helped to set the agenda and frame the narrative of reporting on a number of big issues.

Previous to our background press briefing on DSM 5 few of the UK based science journalists knew about the unease amongst UK scientists. The background press briefing generated vast media coverage and informed the UK’s most important health and science reporters of the issues of concern. The SMC followed this up with several Roundups including comments from large numbers of the UK’s top mental health researchers, all generating continued media coverage.

This kind of agenda setting was also on display in our work around the harassment and intimidation of researchers working on chronic fatigue syndrome/ME. The meeting organised by the SMC on this was the first of its kind and brought the beleaguered researchers together with representatives of funding agencies, the police, the GMC etc. One of the results of that meeting was the decision of a number of academics to go public on their situation with the support of the SMC and their respective press officers .

The SMC engineered the coverage through working with the Today programme on an exclusive – a story that was planned over many weeks. The result was huge with Today making the very best of their exclusive with several different packages on the morning of release. As expected the follow up was huge with almost every newspaper, Sunday paper and influential magazine covering the subject in some way. The results of that coverage have been mixed but include the following:

· Many in the scientific community became aware of the situation having previously been unaware
· For some researchers the media coverage marked the end of their harassment. For others it has continued
· Across the board the researchers who were interviewed received a huge amount of
supportive emails from fellow scientists and from chronic fatigue syndrome/ME patients and their families'



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



The Science Media Centre's self-assessment of the "results" of the lurid 'Death threats' media blitz it conceived, engineered and orchestrated .... sounds altogether too modest.


.
 
Last edited:

anni66

mum to ME daughter
Messages
563
Location
scotland
So much of this makes me sick I wouldn't know where to start. How about here:



What this should say is that 90% of children in the UK are currently fortunate enough to live too far away for Esther Crawley to get her hands on them, but she's out to fix that.



Blimey it's a miracle. Reference?
As in PACE, no long term difference, conflation of illness, inherent bias.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
The next explanation:

Everyone is tired. Everyone has ME. The difference between patients and normal people is that patients are just mismanaging their cognition/childhood difficulties/underlying depression bla bla bla QUACK QUACK QUACK.

This is satire, just to make sure nobody misunderstands.
The definition has already been renamed in EC' s paper on natural recovery in teenagers ( who frm the definition never had ME in the first place) to CDF.
CBT as devised for CFS/ME is not comparable to standard CBT - it is another form of patient blaming and potentially harmful.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
School attendance is more objective than most of the measures they are using. However I would feel more confident if school records were used rather than self-report. Alternatively it would be good if they did a sub-study comparing school records with what is self-reported.
It appears from some previous studies that CBT has the potential to bias responses to questionnaires.
Teenagers are particularly good at telling people what they think they want to hear in order to get them to go away - with no subjective measuring this effect will no doubt be magnified
 
Messages
2,125
Given the current interest in ECs use of Research Ethics i've had a brief look at the FITNET documentation.
Ethics approval
Frenchay Research Ethics Committee, 10/10/2016, ref: 16/SW/0268
From the protocol:
"
8.1 Ethical issues
The main ethical issue in the FITNET-NHS trial is which comparator group should be used. The Board specified that the comparator group should receive a NICE-recommended treatment. We considered this carefully and decided to use Activity Management supported by a specialist occupational therapist. Activity Management is used by some paediatricians (or equivalent specialist doctors) in general paediatric clinics throughout the UK. The Bath Specialist CFS/ME service currently offers limited Activity Management support to children referred from parts of the UK that do not have access to local specialist services.

The second ethical issue is that we need to be certain that this trial recruits children with CFS/ME and not with other disorders that present with fatigue. We believe that it is unethical to ask children who are unwell and disabled by fatigue to travel long distances for an assessment. We have therefore put in place rigorous assessments to ensure that other causes of fatigue are diagnosed and referred for appropriate treatment.

Children will follow NICE guidance and will have an assessment with a local paediatrician (or equivalent specialist doctor) and screening blood tests to exclude other causes of fatigue. There is then further assessment to ensure that they have chronic disabling fatigue and that this is their primary symptom. Children will complete the RCADS online and the research team will use this and other screening questions to exclude significant and dominant anxiety/depression and other mental health disorders as a cause of the fatigue.

Given the reported effectiveness of FITNET in the Netherlands, we have considered whether it is ethical to randomise children to FITNET-NHS in the UK, or whether it should be implemented without a trial. We do not know if FITNET-NHS will be effective, compared with Activity Management, within the NHS where children have access to different treatments and the referral pathway is different, compared to the Netherlands. Further, FITNET-NHS cannot be implemented in the NHS without knowing whether it is cost-effective."

So once again EC has decided the primary symptom is CDF chronic disabling fatigue; as previously pointed out by many, there is no mention of this in the NICE guidelines.o_O

According to the guidelines any publicity/ recruitment brochures also have to meet with REC approvalo_O
How did her literature get approval?

Sorry if any of this has already been covered.

eta:
REC approval here (unfortunately no details)
http://www.hra.nhs.uk/news/research-summaries/?s="16/SW/0268"&research-type=&from=&to=