UK NHS Hertfordshire and West Essex Integrated Care Board ME/CFS clinics

Suffolkres · Nov 22, 2022

Moved from the MEA news thread.

NelliePledge said: ↑

I think it’s absolutely right to get this information out to Practices. Its one element of getting change to happen, giving GPs sensible information about ME and highlighting the new guidelines, education package. It may change things a bit for some people. EG People can ask their GP if they’ve seen the MEA bundle, gives an opportunity to raise ME.

Obviously to get things moving it’s a multi strand approach that’s needed including tackling NHS central organisation for overall strategy, and definitely they need to sort central comms such as web content. Assuming this is where Forward ME are focusing efforts.

And critically tackling the Integrated Care Boards at local level for changing the situation in terms of what service they require from GPs and hospitals. As @Suffolkres is working on in Suffolk area

Also challenging existing services about inaccurate information and need to be NICE compliant in what they deliver.
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Thanks to Charles and MEA stepping in promptly before ICB Meeting this week...., we seem to have made an impact on Herts and West Essex ICB, plus their service provider .....another CIC Community Interest Company..."Provide" who also misrepresented ME within a Long Covid .
Permission to repost from Charles;
Reply just received:

Dear Mr Shepherd
On behalf of Jane Halpin, Chief Executive of NHS Hertfordshire and West Essex ICB we would like to thank you for your email dated 21st November 2022.
Thank you for bringing your concerns around the diagnosis and management of people with ME/CFS and how this is being used to plan the future care and management of people with severe to very severe ME/CFS to the attention of Hertfordshire and West Essex ICB.

We will now look into this matter and aim to provide you with a response by 5th December 2022 (10 working days) however, if there is likely to be any delay, we will ensure to keep you updated. However, if you need to contact us in the meantime the reference number is ICB 4689.
Kind regards.
Jackie
Jackie Bailey
Patient Experience and Performance Co-ordinator
Patient Experience Team
Hertfordshire and West Essex ICB
Patient Experience Team phone number: 01992 566122
ICB switchboard: 01707 685000
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On 21 Nov 2022, at 12:38, Charles Shepherd

Morning Barbara

I have sent the follow communication this morning

Please pass it on to anyone who might want to se it

I have also sent a copy to Baroness Scot - as she will know Paul Burstow

KR

Charles

To:

Rt Hon Paul Burstow, Chair - Herts and West Essex Integrated Care Board
Dr Rachel Joyce - Director of Clinical and Professional Services

Dear Mr Burstow and Dr Joyce

Herts and West Essex Integrated Care Board - Primary Care Board: Diagnosis and Management of people with ME/CFS

I was very disappointed to read some the information in the attached document relating to the diagnosis and management of people with ME/CFS and how this is being used to plan the future care and management of people with severe or very severe ME/CFS in Herts and West Essex.

I have also been contacted by local patient representatives who are upset at the way in which ME/CFS is described and the fact that recommendations in the new NICE guideline are not being properly interpreted in relation to future service planning.

I have commented below on some of the statements that are not consistent with information and recommendations in the new NICE guideline on ME/CFS:

https://www.nice.org.uk/guidance/ng206

I understand that there is a meeting of the ICB PCB on Thursday 24th November to discuss service provision for people with ME/CFS.

Please could you therefore draw these concerns to the attention of people who will be attending this meeting and are involved in the decision making process.

Yours sincerely

Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member of the NICE guideline committee on ME/CFS 2019 - 2021

Copies:

Dr Nina Muirhead - Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP - Chair, APPG on ME
Dr Peter Barry - Chair, NICE guideline committee on ME/CFS
Baroness Ilora Finlay - Co-Chair, NICE guideline committee on ME/CFS
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NHS Herts and West Essex Integrated Care Board (ICB)
Chronic Fatigue Syndrome / Myalgic Encephalitis (CFS / ME) Inpatient treatment
July 2022 V1.0

Document Owner:

Medical Directorate Prepared by: Associate Medical Director for Planned Care and Prioritisation First Published: 1st July 2022 Document number:

Approval date: 1st July 2022 Version number: 1.0 Status: Approved Next review date: 1st July 2024

Chronic Fatigue Syndrome / Myalgic Encephalitis (CFS / ME) Inpatient treatment

Not normally funded

Treatment of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in units out of the local area or for inpatient care is will only be provided in exceptional circumstances following involvement of appropriate local services.

Patients should be diagnosed and managed in a community setting.

Referral for an outpatient local specialist opinion may be required if there is doubt about the diagnosis, or the patient is not improving despite management in primary care.

Rationale

There is limited high quality evidence relating to the effectiveness of this intervention in CFS.

There is evidence of effectiveness from randomised controlled trials of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Guidance on the management of patients is provided in the latest clinical guideline from NICE
.
Clinicians should be aware of the NICE clinical guideline on the effective management of patients with CFS. Referrals to in-patient services for CFS will only be considered in exceptional circumstances as effective management is available locally.

Treatments of unproven effectiveness will not normally be provided under the NHS.

References
https://www.nice.org.uk/guidance/ng206 (2021)

Interventions for the treatment and management of chronic fatigue syndrome/myalgic encephalomyelitis A-M Bagnall, P Whiting, R Richardson, A J Sowden https://qualitysafety.bmj.com/content/11/3/284

http://www.meresearch.org.uk/wp-content/uploads/2013/05/WorkingGroupReport.pdf

Longitudinal study of outcome of chronic fatigue syndrome A Wilson, I Hickie, A Lloyd, D Hadzi-Pavlovic, C Boughton, J Dwyer, D Wakefield https://www.bmj.com/content/308/6931/756.full
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Comment

The above information, which has been prepared for the ICB is very limited and implies that the recommendation in the new NICE guideline on ME/CFS regarding the establishment of a specialist multidisciplinary referral service, as are very clearly set out in Box 3 of the new NICE guideline -

Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS. They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists.

- is not currently available for people covered by the ICB.

And there do not appear to be any plans to provide a proper ME/CFS referral service in future.

The new NICE guideline on ME/CFS recommends that GPs should be able to refer people with ME/CFS (adults and children) to a specialist team/service at three months following the onset of symptoms for confirmation of the diagnosis (as there is a significant rate of misdiagnosis in primary care) and the preparation of a care and management plan.

This recommendation is set out very clearly in sections 1.4.1 - 1.4.4 of the guideline.

In addition:

1 Graded exercise therapy (GET) is not recommended by NICE as a treatment for ME/CFS - see Box 4 in section 1.11 of the new guideline

This is because the NICE guideline committee concluded that the evidence for efficacy for GET in clinical trials was either low or very low.

There is also substantial and consistent patient evidence of people being harmed by GET.

The new NICE guideline provides detailed and very helpful guidance on activity and energy management in sections 1.11.2 - 1.11.14 - this is what should be referred to and referenced.

I assume that the inaccurate ICB statement about the effectiveness of GET relates to the reference to the evidence based review of clinical trials that was carried out for the Chief Medical Officer’s Working Group Report on ME/CFS twenty+ years ago (referenced as Bagnall et al and the actual report) rather than the evidence-based review of non-pharmacological interventions for ME/CFS that was carried out for the new NICE guideline:

Supporting evidence for new NICE guideline: https://www.nice.org.uk/guidance/ng206/evidence

2 CBT can sometimes help some people to cope with symptoms and the psychological effects of living with a long-term condition like ME/CFS.

CBT it is not however a treatment for the underlying disease process.

The NICE guideline review of evidence from clinical trials of CBT concluded that this was low or very low,

3 In relation to severe and very severe ME/CFS, I am very concerned about the lack of information regarding plans for the care and management of people in this group. They are nearly always housebound and are therefore unable to attend community health or hospital out-patient departments.

The information in this document implies that there are no facilities for the assessment and management of people who are severely affected in the area covered by your ICB, none are being planned, and no thought is being given as to where people who may require in-patient assessment or management can be referred.

The NICE guideline committee spent a great deal of time considering the way in which this group of people with ME/CFS are currently ignored and neglected by most of the existing ME/CFS referral services. The guideline sets out what needs to be done to improve the current quite appalling standard of care.

The management of severe and very severe ME/CFS is covered in detail in section 1.17:

https://www.nice.org.uk/guidance/ng...e-for-people-with-severe-or-very-severe-mecfs

Evidence collected by NICE on severe and very severe ME/CFs can be found here:

https://www.nice.org.uk/guidance/ng...s-with-severe-mecfs-symptoms-pdf-333546588759

The ICB should have taken note of the recommendations in the new NICE guideline on all aspects of diagnosis and management of ME/CFS, especially that concerning severe and very severe ME/CFS.

The planning document suggests that this has not taken place.

Attach:

<MEA_CFS_and_ME_Inpatient_Treatment.pdf>
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Suffolkres · Nov 22, 2022

I have also written to Ruth Barlow at Essex Provide re their Long Covid leaflet:

Dear Ruth Barlow

Long Covid and rehabilitation

https://www.activeessex.org/wp-content/uploads/2021/05/Long-COVID-v02-Ruths-presentation-.pdf

I was concerned to read some the information relating to the diagnosis, management and prognosis of ME/CFS in this patient information booklet

I have also been contacted by local patient representatives who are also upset at the way ME/CFS is described in this publication.

I have commented below on some of the statements that are not consistent with information and recommendations in the new NICE guideline on ME/CFS:

https://www.nice.org.uk/guidance/ng206

In regard to the important clinical and pathological overlaps between ME/CFS and Long Covid, could I draw your attention to:

1 The review that I was asked to write for the BMJ/Evidence Based Nursing:

https://meassociation.org.uk/2022/1...J3eFOuvRkiYtnbaRgSAmX_-3Bb3e5VwVMTLf2nFLZL8bw

2 The documentary on Sky television that was broadcast last week - which also covers the dangers of recommending graded exercise therapy for people with Long Covid

https://meassociation.org.uk/2022/1...d-my-life-from-crushing-fatigue-to-brain-fog/

Yours sincerely

Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member of the NICE guideline committee on ME/CFS 2019 - 2021
Click to expand...

Long Covid and rehabilitation

https://www.activeessex.org/wp-content/uploads/2021/05/Long-COVID-v02-Ruths-presentation-.pdf

What is chronic fatigue?
Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms – the most common symptom is extreme tiredness

CFS is also known as ME, myalgic encephalomyelitis

CFS/ME can affect anyone including children and is more common in women, tending to develop between mid-20s and mid-40s

Recognised before Long COVID

Treatment for chronic fatigue

A structured exercise programme graded exercise therapy new guidelines refer to exercise envelopes

Medication for pain, nausea, sleep etc.

Cognitive behavioural therapy (CBT)

Most people with CFS will improve over time, especially with treatment, although some people do not make a full recovery

It's also likely there will be periods when symptoms get better or worse Children and young people with CFS/ME are more likely to recover fully

Comments:

Chronic fatigue is a common symptom that has many different causes and approaches to management.

Chronic fatigue is not the same as ME/CFS - which is defined by NICE as a distinct clinical syndrome.

NICE refers to ME/CFS - not CFS/ME.

The term ‘extreme tiredness’ is not an appropriate way of describing the debilitating activity-induced fatigue that is characteristic of ME/CFS (and Long Covid). This description is not used in the NICE guideline and is strongly disliked by the ME/CFS patient community.

Graded exercise therapy (GET) is not recommended by NICE as a treatment for ME/CFS.

The NICE guideline committee concluded that the evidence for efficacy from clinical trials for GET was either low or very low.

There is also substantial and consistent patient evidence of people being harmed by GET.

The new NICE guideline provides detailed and very helpful guidance on activity and energy management in section 1.11.2 - 1.11.14 - this should be referred to instead.

NICE have also cautioned against the use of GET in Long Covid:

https://www.bmj.com/content/370/bmj.m2912

CBT can sometimes help some people to cope with symptoms and psychological effects of ME/CFS.

CBT it is not a treatment for the underlying disease process.

The NICE review of evidence from clinical trials of CBT concluded that this was low or very low

Although most people with ME/CFS will manage some degree of improvement over time, a full and sustained recovery is unusual.

At the other end of the spectrum around 25% of people are housebound due to being severely affected or very severely affected.
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Suffolkres · Nov 22, 2022

Suffolkres said: ↑

I have also written to Ruth Barlow at Essex Provide re their Long Covid leaflet:

Dear Ruth Barlow

Long Covid and rehabilitation

https://www.activeessex.org/wp-content/uploads/2021/05/Long-COVID-v02-Ruths-presentation-.pdf

I was concerned to read some the information relating to the diagnosis, management and prognosis of ME/CFS in this patient information booklet

I have also been contacted by local patient representatives who are also upset at the way ME/CFS is described in this publication.

I have commented below on some of the statements that are not consistent with information and recommendations in the new NICE guideline on ME/CFS:

https://www.nice.org.uk/guidance/ng206

In regard to the important clinical and pathological overlaps between ME/CFS and Long Covid, could I draw your attention to:

1 The review that I was asked to write for the BMJ/Evidence Based Nursing:

https://meassociation.org.uk/2022/1...J3eFOuvRkiYtnbaRgSAmX_-3Bb3e5VwVMTLf2nFLZL8bw

2 The documentary on Sky television that was broadcast last week - which also covers the dangers of recommending graded exercise therapy for people with Long Covid

https://meassociation.org.uk/2022/1...d-my-life-from-crushing-fatigue-to-brain-fog/

Yours sincerely

Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member of the NICE guideline committee on ME/CFS 2019 - 2021
Click to expand...

Long Covid and rehabilitation

https://www.activeessex.org/wp-content/uploads/2021/05/Long-COVID-v02-Ruths-presentation-.pdf

What is chronic fatigue?
Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms – the most common symptom is extreme tiredness

CFS is also known as ME, myalgic encephalomyelitis

CFS/ME can affect anyone including children and is more common in women, tending to develop between mid-20s and mid-40s

Recognised before Long COVID

Treatment for chronic fatigue

A structured exercise programme graded exercise therapy new guidelines refer to exercise envelopes

Medication for pain, nausea, sleep etc.

Cognitive behavioural therapy (CBT)

Most people with CFS will improve over time, especially with treatment, although some people do not make a full recovery

It's also likely there will be periods when symptoms get better or worse Children and young people with CFS/ME are more likely to recover fully

Comments:

Chronic fatigue is a common symptom that has many different causes and approaches to management.

Chronic fatigue is not the same as ME/CFS - which is defined by NICE as a distinct clinical syndrome.

NICE refers to ME/CFS - not CFS/ME.

The term ‘extreme tiredness’ is not an appropriate way of describing the debilitating activity-induced fatigue that is characteristic of ME/CFS (and Long Covid). This description is not used in the NICE guideline and is strongly disliked by the ME/CFS patient community.

Graded exercise therapy (GET) is not recommended by NICE as a treatment for ME/CFS.

The NICE guideline committee concluded that the evidence for efficacy from clinical trials for GET was either low or very low.

There is also substantial and consistent patient evidence of people being harmed by GET.

The new NICE guideline provides detailed and very helpful guidance on activity and energy management in section 1.11.2 - 1.11.14 - this should be referred to instead.

NICE have also cautioned against the use of GET in Long Covid:

https://www.bmj.com/content/370/bmj.m2912

CBT can sometimes help some people to cope with symptoms and psychological effects of ME/CFS.

CBT it is not a treatment for the underlying disease process.

The NICE review of evidence from clinical trials of CBT concluded that this was low or very low

Although most people with ME/CFS will manage some degree of improvement over time, a full and sustained recovery is unusual.

At the other end of the spectrum around 25% of people are housebound due to being severely affected or very severely affected.

=================================================
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Reply just received:

Dear Dr Shepherd

The presentation you sent me was from when there was no research for long covid and I don’t use it as a patient information booklet, I haven’t asked for it to be used for patient information

As you can see the reference to graded exercise is;
A structured exercise programme graded exercise therapy new guidelines refer to exercise envelopes
So making reference to exercise envelopes rather than graded exercise

I can assure you we are not using graded exercise as we know that it is not suitable for people with fatigue
If you can tell me where the slides where found, I can see if I can remove them

Thanks
Ruth
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And now:

Ive found the site and emailed the site and asked for it to be removed
I did the presentation in Dec 2020 when there was no research about what exercise people with long covid should be doing , plus it was for the fitness instructors, not for patients with long covid …
Thanks for bringing it to my attention
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