Wales & the English ME/CFS Delivery Plan

‘My full reality: the interim delivery plan on ME/CFS’ and the implications for Wales

 

On 9th August 2023 the Department of Health & Social Care published a ‘set of actions to improve the experiences and outcomes of people in England with ME/CFS’. They have invited  people living with ME/CFS, their families and carers, healthcare professionals and researchers to give their views on ‘a set of actions on research, attitudes and education, and living with ME/CFS, as well as about language used in ME/CFS’.

Although the proposals are aimed at those living in England they invite anyone living in the UK to take part in the consultation.

“For the time being, the interim delivery plan covers the population of England… The Welsh Government and Northern Ireland Executive are also keen to review the views of their residents on the interim delivery plan so that they can consider the implications for local policy.”

Feedback from Wales is welcome

The Welsh Government  has told WAMES that:

“Any feedback provided by Welsh residents will be valuable and will be considered in the development and evaluation of the Adferiad services to help us best serve people with ME/CFS.”

The feedback will be fed to the ‘community of practice‘ of representatives from all health boards, that has been set up around the Adferiad services.  They have been discussing expansion of services to include people with ME/CFS following the additional money allocated in March 2023 to expand long COVID services to include other post-viral conditions.

Currently WAMES is in talks with 4 of the health boards – Cardiff & Vale, Cwm Taf Morgannwg, Betsi Cadwaladr and Hywel Dda – about including ME/CFS in their post-viral or chronic conditions service programmes. We hope to hear soon whether plans are underway in the the other health boards.

Take part in the consultation

Find out more about how you can read or listen to the Delivery Plan proposals and take part in the consultation: ME/CFS Delivery Plan for England

You have until 4 October 2023 to respond but WAMES would also be interested in you thoughts on the Plan and it’s implication for Wales.

Contact Jan Russell: jan@wames.org.uk

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ME/CFS Delivery Plan for England published

Delivery Plan on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome for England

 

The DHSC has published the cross-Government Delivery Plan on ME/CFS for England that was begun in May 2022 by the former Secretary of State for Health and Social Care (Rt. Hon. Sajid Javid).

Three working groups were established in June 2022 to support the development of the plan by focusing on three themes:

  • Research
  • Attitudes & Education
  • Living with ME/CFS

Through these groups, Department of Health and Social Care officials engaged with a range of stakeholders, including people with lived experience, charities, professional bodies and representatives from specialist services, to consider available evidence and to develop policy proposals and content.

Consultation

The Interim Delivery Plan has now been published, alongside a focussed 8-week consultation.

The Department of Health and Social Care invites views from people with lived experience of ME/CFS, and their families and carers, as well as the wider public, health, education and care professionals, researchers and organisations representing those living with ME/CFS.

They want to know how far it addresses the issues most important to you and help them to identify where they need to go further.

They aim to publish the Final ME/CFS Delivery Plan for England before the end of the year.

 

Live outside England?

Responses from people who live or work in Wales, Scotland or Northern Ireland will be forwarded to the relevant devolved governments to inform their future policy developments in this area.

“The Welsh Government… are keen to review the views of their residents on the interim delivery plan so that they can consider the implications for local policy.”

Find out more

Government announces new plan to help those impacted by ME/CFS

Interim delivery plan outlines 21 actions to improve understanding, research and care for those living with ME/CFS

Read: My full reality: the Interim Delivery Plan on ME/CFS, and survey 

The survey will take between 20 to 30 minutes to complete. Respondents can leave and come back to complete the survey in stages by clicking on the link to the survey using the same browser.

Listen to: My full reality: the Interim Delivery Plan

The consultation will close on 4 October 2023.

See also:

TES: New guidance on supporting pupils with ME and CFS

MERUK: My full reality: the interim delivery plan on ME/CFS – Our response 

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Severe ME Day: New minicourse on severe ME

Severe ME clinical training for health professionals

 

For Severe ME Awareness Day, Learna / StudyPRN are providing all healthcare professionals with free educational content via their ‘Question of the Day’ Campaign to challenge and improve clinical knowledge, understanding and patient management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Clinicians are invited to complete the course to receive a 0.5 Hour CPD Certificate.

Take part here

Author Dr Nina Muirhead says:

“To mark Severe ME Awareness 2023, this is a short case based series to improve knowledge and increase awareness.

Our case is presented over 5 days and covers four years in the life of a 28 year old man, Rishi.

Questions are designed to engage learners with some of the greatest challenges associated with very severe ME/CFS, including diagnosis and investigations, home visits, managing severe malnutrition and navigating hospital admission as well as recognising the impact of severe and very severe ME/CFS on the quality of life of patients and their families.”

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Ffion: Struck down by ME & vax, uplifted by poetry & card-making

Struck down by ME and vaccinations – Uplifted by poetry and card-making

 

A lover of the outdoors, and a literature and languages graduate, Ffion’s ME deteriorated after a COVID vaccination.

Her life was already restricted, though she had found a release through writing poetry (often humorous) and making cards, and was occasionally able to enjoy short walks in nature. The vaccination changed that. Now, she says:

Must lie down, darkened room, eye-mask on, in silence, 5-7 hours a day. 

Generally spend, daily, 15-17 hours lying in/on bed.

When upright for c. 1hr in house, very limited – able to:

  • make 1-2 cards a day, on a good day
  • type a couple of emails
  • write and upload a poem
  • listen to a little Audible (unable to read book etc. since 2010 and unable to hold face-to-face or phone conversation for more than a couple of minutes…. Oh, the irony…. and me a literature and languages graduate….)
  • watch c. 20-30 mins of “easy” TV in evening – nothing fast-paced, active, bright/flashy etc and no more French films for me, nor sub-titled ones, etc. etc.

To sum up

When able to do so very little
It’s a struggle …
To fill in an endless day …

“Activity” must be
Meticulously measured …

Added?

No, divided ….

Then …

Taken away …

Ffion’s husband manages her poetry blog. Each poem is accompanied by a carefully chosen image and she has noted the important role he plays in her life and creativity.

Thank you to the good man in my life

 

 

 

Lying, quietly, in comfy bed …
Room bathed in monochromatic light …

Gradually, the world awakens …
Advancing daylight vanquishes night.

And then appears …. The Good Man …
His presence a balm to my burnt-out brain …

“How was your night?”, he gently asks …
And day – if not Life – begins again …

Ffion marks Severe ME Day 2023 with: A life in a day

Read more poems by Ffion: ffionoriginalpoems

See Ffion’s cards on Facebook: Ffion.cards.1

 

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A life in a day? A poem by Ffion for Severe ME Day

A LIFE IN A DAY …?

8th August 2023: Severe ME Day

 

 

 

 

Rise,
Take pain-med.
Lie down to recover …

Try to read EMail?
Lie down to recover …

Eat light breakfast,
Recline to recover …

Little chat, husband/cat?
Lie down to recover …

Make a card …?
Lie down to recover …

Pain-med.
Light lunch …
Recline to recover …

Shower?? …
AND
Wash hair???????
Long lie-down to recover!

Write?
AND
Upload
Poem?
Lie down to recover!

Sit in garden?
Lie down to recover …

Pain-med.
Light supper …
Lie down to recover.

20  mins easy TV?
Lie down to recover?

No ….

9.00 p.m.
I must to bed …

Pain-med.
Rest head …

My life …

Enough said….

From: ffionoriginalpoems

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Severe ME: caring for bedbound with ME

Caring for people with ME/CFS who are bedbound

 

Emerge Australia has put together a guide to help you care for a loved one who is severely impacted by ME/CFS and has become bedbound

People who are mostly or entirely bedbound by ME/CFS may need support with:

ME/CFS leaves some people so unwell that they are not able to manage any activities of daily living without help.

They are often extremely sensitive to light, sound and touch, and need total care.

They may not be able to speak or may only be able to speak in short bursts.

While some of the information in the guide is tailored for people living in Australia it also covers the range of symptoms and disabilities and the need to work with healthcare professionals and look out for changes to the bedbound person’s condition.

Also included are practical tips for helping with activities of daily living:

  • bathing
  • toileting
  • tooth brushing
  • dressing
  • eating and drinking
  • moving and better positioning to protect the person from pressure ulcers, contractures, skin and joint irritation, and poor alignment
  • mobility and transfers to protect both the carer and person with ME/CFS from injury due to lifting and turning
  • setting up the room to protect the person from unnecessary physical, cognitive or emotional exertion
  • Support and socialising

Read the 8 page guide online

Download the pdf

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#EndMalnutrionInME guidelines

Severe ME day – #EndMalnutrionInME guidelines

 

ME needs to be recognised as a risk disease for malnutrition

For Severe ME Day 2023 the 25% Group, which represents people with severe ME, say that currently, allied health care professionals are often unaware that severe ME/CFS can cause nutritional difficulties; ME needs to be recognised as a risk disease for malnutrition and that this can be life threatening.

An early warning system needs to be put in place so that when a patient or their carer report difficulties maintaining nutrition and hydration needs, prompt action is taken.

The inclusion of ME in nutritional guidelines at a national level would help bring about recognition of the condition. However, it is imperative that health care professionals use the tools and guidelines that were specifically designed to manage and treatment malnutrition in conjunction with NICE Guideline 206.

With this in mind, 25% ME Group have gathered together the relevant sections from the guidelines, as well as the links for other useful websites for your ease of use:

  • The NICE Clinical Guideline NG206 for ME/CFS (1.12 and 1.17)
  • The NICE Clinical Guideline CG32: Nutrition support for adults (oral nutrition support, enteral tube feeding and parenteral nutrition covers adults who are malnourished in hospital or their own home or a care home.)
  • NICE Nutritional Support in Adults Quality Standard (QS24)

Read the full statement:

25% Group: Malnutrition in severe ME 

Download an extract:

Guidelines on Nutrition for ME

 

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Video: Very severe ME/CFS

Video: Very severe ME/CFS, from Broken Battery

 

Very Severe ME/CFS is a debilitating condition causing profound suffering and life-threatening symptoms.

Patients are in bed all day and dependent on care.

They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to ingest food and need to be tube fed [1].

Most doctors have had no formal training; many think it’s psychological and some don’t even believe in the condition. Misdiagnosis and inappropriate management are common.

Recently, there have been two high-profile cases of patients being refused support [2] and an inquest into the death of a person due to medical neglect is currently ongoing [3].

The NICE Guideline has more information including special sections relating to Severe and Very Severe ME/CFS [4].

1. https://www.mdpi.com/2227-9032/9/4/459
2. https://archive.li/2023.02.28-221814/…
3. https://www.codastory.com/waronscienc…
4. https://meassociation.org.uk/wp-conte…

#EndMalnutritionInME    #SevereMEday

Watch more videos from Broken Battery

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Standing strong-Global ME community is unified in support NICE ME/CFS guideline

Standing strong – Global ME community is unified in firm support for the NICE 2021 ME/CFS guideline

 

WAMES has joined 56 leaders in the ME community from across the globe in writing a rapid response to the July 2023 article titled “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis.”

The World ME Alliance is disappointed that the Journal of Neurology and Neurosurgery and Psychiatry (JNNP) has not published our rapid response to this article.

Instead, this article remains published, while rapid responses rebutting it are not. This is a major disservice to people with ME everywhere. Readers of this article, and especially professionals who support and care for people with ME, must understand the strength of opposition to these author’s controversial assertions.

this response reiterates the significance of advancing treatments that genuinely improve the lives of those affected by ME

In our rapid response, authors from over 24 countries firmly endorse NICE’s statement that they “reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that NICE has not followed international standards for guideline development which has led to guidance that could harm rather than help patients”. And call for “progress beyond outdated and repetitive arguments.”

While awaiting NICE’s forthcoming detailed response, this rapid response underscores the international ME community’s unity in support of the 2021 NICE guideline on “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.” By shedding light on the extensive backing of the ME community and underscoring the imperative for ongoing research, this response reiterates the significance of advancing treatments that genuinely improve the lives of those affected by ME.

Read the unpublished letter

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Severe ME gallery 2023

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