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CFS The USA, NIH categorises these patients as 2003 Canadian Consensus Criteria ME/CFS. How are they helped in the UK?

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Dear Department of Health,

I request copies of the most recent information held by the DoH on the appropriate care/treatment for people who have the following symptoms:

i) exertion triggering post exertional neuroimmune symptoms -including but not limited to sore throat, flu, severe headaches, nausea, increased noise/chemical/food intolerances and sensitivities, tinnitus.
ii) orthostatic intolerance (POTS- NASA stand up test)
iii) ataxia (Rhomberg test)
iv) low anaerobic threshold measured via CPET test at 61% of age predicted maximum
v) low heart rate variability as measured on “wearable” heart rate monitors such as polar H10, ZephyHRM etc..
vi) abnormally long elevated resting heart rate after tiny amounts of exertion -clearly visible on heart rate traces from “wearables”.
vii) high orthostatic rate that also increases for 4-5 days after exertion as measured on “wearables”.

The USA the National Institute of Health is studying this group of patients who are described in the 2003 Canadian Consensus Criteria, for the neurological disease myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS, but I can't find any information in our UK NICE Guidelines for these patients, so I am asking you if for copies of your information.

Yours faithfully,

Dave Tullerach

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Do Not Reply, Department of Health and Social Care

1 Attachment

Dear Mr Tullerach,

Please find attached the Department of Health's response to your recent
FOI request (our ref: 1082687 ) 

Yours sincerely,

 Dorothy Crowe 

Freedom of Information team
Department of Health

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Dear Department of Health,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of Department of Health's handling of my FOI request 'CFS The USA, NIH categorises these patients as 2003 Canadian Consensus Criteria ME/CFS. How are they helped in the UK?'.

I note your suggestion that the NICE Guidelines may be of assistance, however this is not the case.

I have reviewed the NICE Guidelines and information on the public register and they do not have any information on how patients with the physical/physiological symptoms found in people with CFS as defined in the Canadian Consensus Criteria (CCC) are to be treated. There is a minor reference to the decision to draft a "new broad" definition for CFS and a rejection of the CCC definition. The issue of concern is not about the name/criteria used for the disease but how persons with the physical/physiological symptoms listed in the CCC are to be treated in the UK. They appear to have be totally ignored.

NICE states that any treatments/guidelines pertaining to people with these symptoms are not included in its guidelines for NICE defined CFS, as not everyone with NICE defined CFS, does not have these symptoms.

This explanation is rather curious. It appears that NICE in its definition of CFS excludes people with known physical and physiological symptoms and that since NICE has chosen to take it upon itself to re-define CFS in a broad sense it has chosen to ignore the sicker and physically/physiologically ill patients. It's a bit like re-defining cancer as anyone with spots and leaving out the people with malignant tumors as not all tumors are malignant.

The NICE Guidelines are silent on the physiological and physical signs and symptoms of the neurological disease ME/CFS despite the fact that these physiological and physical signs and symptoms can be used to mange and treat aspects of the disease. As detailed in the Canadian Consensus Criteria-2003, the International Consensus Criteria - 2011 and the Institute of Medicine Criteria-2015.

On the basis of your response it appears that the Department of Health has also abandoned this cohort of patients.

I find it hard to believe that the Department of Health has NO information on treatment options/guidelines for patients with NICE defined CFS and the listed physiological and physical symptoms. As there are millions of patients in the UK suffering with this disease.

Hence I request a review of the your decision.

A full history of my FOI request and all correspondence is available on the Internet at this address: https://www.whatdotheyknow.com/request/c...

Yours faithfully,

Dave Tullerach

FreedomofInformation, Department of Health and Social Care

Dear Mr Tullerach,

Thank you for your request for an internal review of FOI 1082687.

I have accepted your request for a review and will endeavour to complete the review and respond to you within 20 working days, in this case 16 June 2017.

Thanks,
Harish

Harish Sehdev
Freedom of Information Team
Department of Health, Room G18, Richmond House,
79 Whitehall, SW1A 2NS
Follow us on Twitter @DHgovuk

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Dear FreedomofInformation,

I refer to the advice by Harish Sehdev that I would receive a response by 16 June 2017. It is now 24 July 2017 and I have not received a response to my request.
Yours sincerely,

Dave Tullerach

Just as an aside, you might be interested to know that the Centre for Disease Control (CDC) has updated its website in view of 9,000 biomedical research findings and graded exercise therapy (GET) and cognitive behavior therapy (CBT) are no longer considered suitable for any patients with CFS.

FreedomofInformation, Department of Health and Social Care

Dear Mr Tullerach,

I apologise for the delay in completing your requested review. Unfortunately, I require more time.

I will keep you updated.

Thanks,
Harish

Harish Sehdev
Deputy Head of Freedom of Information
Department of Health, Room G18, Richmond House,
79 Whitehall, SW1A 2NS
Follow us on Twitter @DHgovuk

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Dear Harish,

Please be advised that since I wrote to you NICE has advised that it will not be updating its decade old guidelines for CFS.
The NICE decision is shrouded in secrecy and NICE has refused to release the names/positions of the "experts" who advised it to ignore the biomedical, physiological and physical research of the past decade into CFS.
The position taken by NICE is at odds with the research and science based findings of the USA Centre for Disease Control and National Institute of Health as per these departments websites.
The hidden and secret manner in which NICE has made its decision is at odds with the open, transparent and patient inclusive decision making and research based findings of the CDC and NIH.
NICE in standing by and not updating its 2007 guidelines continues to ignore a large subset of CFS patients, a subset of patients that are defined in the 2003 Canadian Consensus Criteria for CFS.
I seek information on how the Department of Health will help these UK patients.

Yours sincerely,

Dave Tullerach

FreedomofInformation, Department of Health and Social Care

1 Attachment

Dear Mr Tullerach,

I apologise for the length of time it has taken to complete your requested review into the handling of FOI 1082687.

The review is now complete and I attach the outcome.

Regards,

Harish Sehdev
Deputy Head of Freedom of Information
Department of Health, Room G18, Richmond House,
79 Whitehall, SW1A 2NS
Follow us on Twitter @DHgovuk

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