CFS pervasive refusal disorder and other mental health misdiagnosis compared to severe ME/CFS and profound ME/CFS

Freda Frogget made this Freedom of Information request to University of Bristol

This request has been closed to new correspondence from the public body. Contact us if you think it ought be re-opened.

The request was refused by University of Bristol.

Dear University of Bristol,

I've not been able to find information on the surveillance study by Ester Crawly and her associates looking at re-diagnosing children, with severe/profound ME/CFS, as having mental health disorders and/or PAWS and PRD, so I'm asking for it here.

i) Bristol Univeristy's guideline on pervasive refusal disorder (PRD)/pervasive arousal withdrawal syndrome (PAWS).

ii) PRD and PAWS lie outside the psychiatric classification system, copy of the information and any resulting position papers to support, the the disorder. Ie steps taken by Bristol University, to ensure that PRD and PAWS are real and not artificial constructs of a group of psychiatrists.

iii) Guidelines on the PAWS/PRD, mechanisum, presentation, objective measures, subjective measures and pathophysiology.

iv) Guidelines Bristol University, has in place to ensure children with ME/CFS, are not mis-diagnosed with PRD and PAWS.

How it ensures that children don't miss out on treatments relevant to a ME/CFS diagnosis_
ie treatment for orthostatic intolerance, heart rate monitored pacing (as per NICE), help with identifying food/chemical/environmental intolerances, sleep hygiene, etc...
(As you are aware- GET and CBT have been found to be ineffective and harmful for treating ME/CFS - hence whilst encouragement to be active may help mental health disorders it is not appropriate for children with ME/CFS).

v) In the past twenty years:
a) How many children "with" ME/CFS have been re-diagnosed with PRD/PAWS?
b) Treatment regime for children with PRD/PAWS?
c) Treatment outcomes for children with PRD/PAWS?
d) Number of children diagnosed with PRD/PAWS, taken into psychiatric care?

vi) In the past twenty years,
a) How many children "with" ME/CFS have been diagnosed with mental health disorders that fully explain their symptoms?
c) Treatment outcomes for the children re-diagnosed with mental health disorders after an initial diagnosis of ME/CFS?
d) Number of children initially diagnosed with ME/CFS (whether or not re-diagnosed with a mental health disorder) taken into psychiatric care?

vii) Sophie Mirza is one person taken into care against her will, leading to health deterioration and death.
How many children have deteriorated in psychiatric care?

viii) Number of children who on being taken into psychiatric care, that have have recovered.

ix) Number of children that have been taken from their families in the past 10 years?

Yours faithfully,

Freda Frogget

Extract from MEDSCAPE article about the IAMECFS conference:

The symptom heterogeneity, combined with the lack of specific biomarker, has resulted in skepticism among some clinicians that the condition is biologically, rather than psychologically, based.
However, studies during the last decade point to biological underpinnings. At the biennial IACFSME conference, more than 100 papers were presented that contribute further to the evidence base, according to Anthony L. Komaroff, MD, professor of medicine at Harvard University, Boston, Massachusetts, and editor-in-chief of the Harvard Health Letter.

"Case-control studies comparing patients with ME/CFS to both disease comparison groups and healthy control subjects find robust evidence of an underlying biological process involving the brain and autonomic nervous system, immune system, energy metabolism, and oxidative and nitrosative stress,"

Dr Komaroff said in a conference summary at the end of the meeting.

He added, "To those people out there who still question whether there is really anything wrong in this illness, my advice to them would be try consulting the evidence."

http://www.medscape.com/viewarticle/871552

University of Bristol FOI mailbox, University of Bristol

Thank you for your email.
The University will respond to requests under the Freedom of Information
Act within 20 working days. We may need to ask you certain questions to
clarify your request to ensure we fully understand what information is
being requested. If so, the 20 working day deadline will be calculated
once we have received such clarification. 
The University's A-Z index can help in locating information that is
publicly available on the University's
website: [1]http://www.bristol.ac.uk/index/
Our Publication Scheme is available
at: [2]http://www.bristol.ac.uk/media-library/s...
The Higher Education Statistics Agency (HESA) annually publish certain
data about students and higher education, and also have a bespoke data
request service: [3]https://www.hesa.ac.uk/
For further information about the University's FOI procedure, please
see: [4]http://www.bristol.ac.uk/secretary/foi/

--
Review procedure
If you are not satisfied with the University’s response to your request
you may ask the University to review the response by writing to:
Director of Legal Services
Secretary’s Office
University of Bristol 
Senate House
Tyndall Avenue
Bristol BS8 1TH 
Email: [5][University of Bristol request email] 
enclosing a copy of your original request and explaining why you are
requesting a review. The full review procedure is set out at:
 [6]http://www.bristol.ac.uk/secretary/foi/r...
Your request for internal review should be submitted to us within 40
working days of receipt of a response.  
If you are not satisfied with the outcome of the internal review you may
also contact the Information Commissioner’s Office at: 
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
[7]www.ico.gov.uk 
Best wishes
Freedom of Information Team
University of Bristol

References

Visible links
1. http://www.bristol.ac.uk/index/
2. http://www.bristol.ac.uk/media-library/s...
3. https://www.hesa.ac.uk/
4. http://www.bristol.ac.uk/secretary/foi/
5. mailto:[University of Bristol request email]
6. http://www.bristol.ac.uk/secretary/foi/r...
7. http://www.ico.gov.uk/

University of Bristol FOI mailbox, University of Bristol

Dear Freda Frogget
Thank you for your two requests under the Freedom of Information Act
received on 30th November and 1st December.
Under section 8(1)(b) of the Freedom of Information Act, requesters must
provide their real name for a request to be valid: 
​​​​"(1) In this Act any reference to a “request for information” is a
reference to such a request which—
(a) is in writing,
(b) states the name of the applicant and an address for correspondence,
and
(c) describes the information requested."
The Information Commissioner’s Office (ICO) has produced [1]guidance in
how to recognise a request made under the Freedom of Information Act.
Paragraph 28 of that guidance says:
​​“If the requester has used a pseudonym then their request will be
invalid.”
As
​ we consider​ you have made this request using a pseudonym, this request
​is​ invalid. Paragraph
​s​ 15
​ and 16​ of that same guidance states:
​​​​“
​15. ​In our view, the intention of the legislation is for the requester
to provide their real name so their request could be processed in
accordance with the requirements of the FOIA.”
​16. ​This is supported by the fact that there are circumstances
​ ​under the FOIA where a requester’s true identity can be
​ ​relevant, for example, where an authority is considering
​ ​aggregating the cost of requests or refusing a request as
​ ​vexatious or repeated.
​"​
This is particularly relevant given the vexatious use of the Freedom of
Information Act as a means by which to harass and distract academics
involved in CFS research, an argument upheld in this decision notice from
the Information Commissioner's Office in March 2016:
​[2]https://ico.org.uk/media/action-weve-tak...
Review procedure
If you are not satisfied with the University’s response to your request
you may ask the University to review the response by writing to:
Director of Legal Services
Secretary’s Office
University of Bristol 
Senate House
Tyndall Avenue
Bristol BS8 1TH 
Email: [3][University of Bristol request email] 
enclosing a copy of your original request and explaining why you are
requesting a review. The full review procedure is set out at:
 [4]http://www.bristol.ac.uk/secretary/foi/r...
Your request for internal review should be submitted to us within 40
working days of receipt of a response.  
If you are not satisfied with the outcome of the internal review you may
also contact the Information Commissioner’s Office at: 
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
[5]www.ico.gov.uk 
Best wishes
Freedom of Information Team
University of Bristol

References

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1. https://ico.org.uk/media/1164/recognisin...
2. https://ico.org.uk/media/action-weve-tak...
3. mailto:[University of Bristol request email]
4. http://www.bristol.ac.uk/secretary/foi/r...
5. http://www.ico.gov.uk/

Dear University of Bristol FOI mailbox,

It has long been a tactic of the small, powerful cohort of personal, seeking to substantiate their biopsychosocial view of the neurological disease CFS, to gas light, any personal seeking information or statistics relating to CFS.
This claim is not vexatious or frivalous, to claim that it is at odds with the facts.
I take it that Bristol Univeristy doesn't collect the statistics requested.
I take it that Bristol Univeristy is covering for it's placement of physical disease CFS, under the jurisdition of a mental health practitioner with little knowledge, ability or willingness to learn about the physical/physiological aspects of the disease.
I take it that objective measures of physical functional capacity and physiological abnormalities have not been determined, in children with severe CFS, and or pervasive refusal disorder, presumably to do so would collect information that confirms the false claims and beliefs that CFS is a mental health disorder.
I take it that Bristol University, is admitting that it's staff can't distinguish between pervasive refusal disorder (a very rare disorder) and ME/CFS (common disease).
In a roundabout way, you have answered my query gas lighting starts when the questions are too uncomfortable to answer.

Yours sincerely,

Freda Frogget

University of Bristol FOI mailbox, University of Bristol

Thank you for your email.
The University will respond to requests under the Freedom of Information
Act within 20 working days. We may need to ask you certain questions to
clarify your request to ensure we fully understand what information is
being requested. If so, the 20 working day deadline will be calculated
once we have received such clarification. 
The University's A-Z index can help in locating information that is
publicly available on the University's
website: [1]http://www.bristol.ac.uk/index/
Our Publication Scheme is available
at: [2]http://www.bristol.ac.uk/media-library/s...
The Higher Education Statistics Agency (HESA) annually publish certain
data about students and higher education, and also have a bespoke data
request service: [3]https://www.hesa.ac.uk/
For further information about the University's FOI procedure, please
see: [4]http://www.bristol.ac.uk/secretary/foi/

--
Review procedure
If you are not satisfied with the University’s response to your request
you may ask the University to review the response by writing to:
Director of Legal Services
Secretary’s Office
University of Bristol 
Senate House
Tyndall Avenue
Bristol BS8 1TH 
Email: [5][University of Bristol request email] 
enclosing a copy of your original request and explaining why you are
requesting a review. The full review procedure is set out at:
 [6]http://www.bristol.ac.uk/secretary/foi/r...
Your request for internal review should be submitted to us within 40
working days of receipt of a response.  
If you are not satisfied with the outcome of the internal review you may
also contact the Information Commissioner’s Office at: 
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
[7]www.ico.gov.uk 
Best wishes
Freedom of Information Team
University of Bristol

References

Visible links
1. http://www.bristol.ac.uk/index/
2. http://www.bristol.ac.uk/media-library/s...
3. https://www.hesa.ac.uk/
4. http://www.bristol.ac.uk/secretary/foi/
5. mailto:[University of Bristol request email]
6. http://www.bristol.ac.uk/secretary/foi/r...
7. http://www.ico.gov.uk/

Dear University of Bristol,

I wish to apologise for the tone of my initial response to my request for information from Bristol University. I was frustrated with the on-going enablement, of false claims/poor quality research, to be carried out by continued hiding of data, and the gas lighting of persons seeking data.

As you are aware, proponents of the biopsychosocial/Wessley school of thought which Ester Crawley is a part, have a long history of claiming “victimhood” and harassment, when their science/claims is questioned. No charges have ever been laid, nor has evidence of harassment ever been substantiated by the police or authorities.

In fact, the First Tribunal judge who ordered the release of the PACE trial raw data, found claims of harassment and vexatious conduct, unfounded.

http://informationrights.decisions.tribu...

Further, the recently published reanalysis of the PACE trial, raw data, as per the original protocol, has verified, that the patients concerns and questions about the trial were sound and correct. The published re-analysis paper confirms, the patient’s experiences, i.e. CBT and GET, are NOT effective in treating/curing ME/CFS.
http://www.tandfonline.com/doi/abs/10.10...

Claims that the study of ME/CFS is controversial, are alleged to be made, and reiterated, ad nauseum, by Ester Crawley and her (Wessely school/biopsychosocial) colleagues, solely, to divert attention from the facts of the matter and the questions about their science.

The claim that my request is vexatious, is not substantiated. I'm happy to amend my request into a suitable format, should that be provided.

Please advise provide the information requested and advise where applicable, that the data requested is not collected.

Yours faithfully,

Freda Frogget

University of Bristol FOI mailbox, University of Bristol

Dear Ms Frogget

Thank you for your emails of 14 and 15 December.

Your request has not been declined as vexatious.  It has been declined as
invalid under section 8(1)(b) because although you have provided an
address for correspondence, you have not provided your real name.

The log of your correspondence on What Do They Know indicates that you are
awaiting an internal review of the University’s handling of your request,
but we have no record of receiving any request from you for an internal
review. 
 
Review procedure
If you are not satisfied with the University’s response to your request
you may ask the University to review the response by writing to:
Director of Legal Services
Secretary’s Office
University of Bristol 
Senate House
Tyndall Avenue
Bristol BS8 1TH 
Email: [1][University of Bristol request email] 
enclosing a copy of your original request and explaining why you are
requesting a review. The full review procedure is set out at:
 [2]http://www.bristol.ac.uk/secretary/foi/r...
Your request for internal review should be submitted to us within 40
working days of receipt of a response.  
If you are not satisfied with the outcome of the internal review you may
also contact the Information Commissioner’s Office at: 
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
[3]www.ico.gov.uk 
​Kind regards
Freedom of Information Team
University of Bristol

References

Visible links
1. mailto:[University of Bristol request email]
2. http://www.bristol.ac.uk/secretary/foi/r...
3. http://www.ico.gov.uk/

Dear University of Bristol FOI mailbox,

Why would Bristol University want me to provide additional personal information, that will impinge on my privacy, in order to obtain information on the treatment data from its CFS clinic?

The only reason that appears to make sense is that Bristol University seeks to "hide" objective outcome data from the public, as it would confirm the findings by others that the treatments being offered by are ineffective and often harmful.

Yours sincerely,

Freda Frogget

University of Bristol FOI mailbox, University of Bristol

Thank you for your email. The University will respond to requests under
the Freedom of Information Act within 20 working days. We may need to ask
you certain questions to clarify your request to ensure we fully
understand what information is being requested. If so, the 20 working day
deadline will be calculated once we have received such clarification. 
The University's A-Z index can help in locating information that is
publicly available on the University's
website: [1]http://www.bristol.ac.uk/index/
Our Publication Scheme is available
at: [2]http://www.bristol.ac.uk/media-library/s...
The Higher Education Statistics Agency (HESA) annually publish certain
data about students and higher education, and also have a bespoke data
request service: [3]https://www.hesa.ac.uk/
For further information about the University's FOI procedure, please
see: [4]http://www.bristol.ac.uk/secretary/foi/

--
Review procedure
If you are not satisfied with the University’s response to your request
you may ask the University to review the response by writing to:
Director of Legal Services
Secretary’s Office
University of Bristol 
Senate House
Tyndall Avenue
Bristol BS8 1TH 
Email: [5][University of Bristol request email] 
enclosing a copy of your original request and explaining why you are
requesting a review. The full review procedure is set out at:
 [6]http://www.bristol.ac.uk/secretary/foi/r...
Your request for internal review should be submitted to us within 40
working days of receipt of a response.  
If you are not satisfied with the outcome of the internal review you may
also contact the Information Commissioner’s Office at: 
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
[7]www.ico.gov.uk 
Best wishes
Freedom of Information Team
University of Bristol

References

Visible links
1. http://www.bristol.ac.uk/index/
2. http://www.bristol.ac.uk/media-library/s...
3. https://www.hesa.ac.uk/
4. http://www.bristol.ac.uk/secretary/foi/
5. mailto:[University of Bristol request email]
6. http://www.bristol.ac.uk/secretary/foi/r...
7. http://www.ico.gov.uk/

University of Bristol FOI mailbox, University of Bristol

Dear Ms Frogget,

 

As you have already been advised your request has been declined as invalid
under section 8(1)(b) of the Freedom of Information Act 2000 because
although you have provided an address for correspondence, you have not
provided your real name. 

The University will not enter into further correspondance.  If you are not
satisfied with the University's decision you should now contact the
Information Commissioner’s Office directly.  

The Information Commissioner's Office can be contacted at: 

Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
[1]www.ico.gov.uk 
Best wishes
Freedom of Information Team
University of Bristol

 

 

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