NICE guidelines - Resources on severe and very severe ME.

Trish

Trish

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Staff member
I think it would be useful for all of us, and perhaps for the NICE committee members, to gather together resources about severe and very severe ME. This could include research and patients stories that illustrate good and bad practice in care for the very severely affected.
 
I would like all members of the NICE guideline committee to read the following:

Jessica Taylor Bearman's book 'A Girl behind dark glasses'

'A life hidden: The Power of Listening' by UK ME patient Naomi Whittingham
Website here Thread here

Ani van der Zee's blog, especially the interview with Dr Mark Vink here
 
Actually I remember reading the temporary and extended version of the previous NICE guideline and thinking there were some good elements in there. Unfortunately most did not reach the final (shortened) guideline - partly because of the aggressive comments by Barths I suppose.

Here are some interesting passages:

"As they [people with severe CFS/ME] have cognitive difficulties they may find it helpful to have an audio tape of the consultation to play back, or to have the consultation summarised in a written format.

The provision of aids, equipment and environmental adaptation should also be considered in order to increase independence, allow dignity and increase overall functioning of severely affected people

In terms of support, assistance may not only be needed for personal care but for domestic tasks, food preparation and shopping (a ‘blue badge’ may be particularly helpful)

As the child/young person may have cognitive problems, which will make reading in particular difficult, audio-visual media, if tolerated, should be used, over short periods.

The impact on caring for someone suffering from severe CFS/ME, on the primary carer and the family, is overwhelming and absolute. A carer offers physical and emotional support but for the carer to watch and care for a loved one with severe CFS/ME it is physically, emotionally and spiritually demanding.

Family life may also be affected as people with severe CFS/ME are often sensitive to sounds and smell. For example, the person may be unable to tolerate light or cleaning products whilst they are often unable to control their body temperature, thus impacting on the living environment. The family are also unlikely to be able to have any formal family time together

People with severe CFS/ME may need round the clock care, If this cannot be provided by a family member or friends, care will need to be provided for them. Those caring for an individual with severe CFS/ME professionally need an understanding of the illness and the needs of the individual to meet the challenges of, for example, cooking or cleaning for an individual who is sensitive to the smell of food or of cleaning materials or bathing an individual who finds touch painful. Therefore proper training should be given about the condition with the involvement of the patient for any particular problems.

Due to the severity in symptoms, any management programme devised for severely affected people must be developed and implemented with great care to lessen the chance of exacerbation. People with severe symptoms may be more susceptible to the cumulative effect, with their bodies being able to neither undertake nor sustain . In devising a programme the healthcare professional should understand, that to sit up or for some severely affected people to lift their head is an achievement and having a conversation is a good day.

For severely affected people, symptom management is regarded as the most useful form of management. However, they may have greater sensitivity to agents and therefore care must be taken when introducing drugs.

Severely affected patients may face many difficulties in achieving adequate and balanced dietary intake including:
  • Pain and fatigue can make the physical process of eating difficult and help may be required with feeding
  • Sensitivity to the smell or taste of food
  • Swallowing difficult or painful
  • Sore throat can make eating difficult
  • Nausea can severely affect ability to eat
  • Bowel symptoms can affect food choices
  • Restricted diets due to food intolerances
  • Disturbed sleep patterns can cause meal patterns to be radically disrupted
  • Carers may be required to help with all aspects of food purchase and preparation."
 
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Sorry to sound like a broken record but all people at NICE connected to the guidelines and the committee should watch Voices from the Shadows (the shortened version).
http://voicesfromtheshadowsfilm.co.uk/

eta:
with an additional 'update' ie that at least two of the patients featured are no longer alive. They (particularly the BPS proponents on the Committee) need to understand the damage they have done/continue to do.
 
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Sly Saint said:
Sorry to sound like a broken record but all people at NICE connected to the guidelines and the committee should watch Voices from the Shadows (the shortened version).
http://voicesfromtheshadowsfilm.co.uk/
Click to expand...

I agree. I wonder even whether a group viewing of it could be arranged so they all watch it together and can respond and discuss it while it's fresh in their minds.

Does anyone know of any good research on care for people with very severe ME?
 
Trish said:
I would like all members of the NICE guideline committee to read the following:

Jessica Taylor Bearman's book 'A Girl behind dark glasses'

'A life hidden: The Power of Listening' by UK ME patient Naomi Whittingham
Website here Thread here

Ani van der Zee's blog, especially the interview with Dr Mark Vink here
Click to expand...
Perhaps @Naomi10 could do her presentation for them - maybe on Skype
 
Trish said:
I agree. I wonder even whether a group viewing of it could be arranged so they all watch it together and can respond and discuss it while it's fresh in their minds.

Does anyone know of any good research on care for people with very severe ME?
Click to expand...
Action4ME did a survey a few years back on social care for pwme.It wasn't specifically for severe me but I did read quite a lot of it at the time and it was pretty good and relevant to me [am severely affected ]and I was very surprised as it was action 4me
also Greg Crowhurst book caring for people with severe me. neither of these are research ,but there is so little about severe ME anyway let alone research on care for pw severe me. And Julia Newtons etc study about severe ME has reached conclusions including ' there symptom burden is great and quality of life is poor . these factors must be considered when planning research and methods of engaging with such a cohort' [ duh ] I will have to see if I can come back later and put the links up . but I might not as none of them are actual research into care for pw severe me. but I think that is probably all there is on care for people with severe ME.
 
Alis said:
Action4ME did a survey a few years back on social care for pwme.It wasn't specifically for severe me but I did read quite a lot of it at the time and it was pretty good and relevant to me [am severely affected ]and I was very surprised as it was action 4me
also Greg Crowhurst book caring for people with severe me. neither of these are research ,but there is so little about severe ME anyway let alone research on care for pw severe me. And Julia Newtons etc study about severe ME has reached conclusions including ' there symptom burden is great and quality of life is poor . these factors must be considered when planning research and methods of engaging with such a cohort' [ duh ] I will have to see if I can come back later and put the links up . but I might not as none of them are actual research into care for pw severe me. but I think that is probably all there is on care for people with severe ME.
Click to expand...

I was involved with the APPG initiative which followed the Catherine Hale Report on Barriers to Care for "PWME survey" a few years back on social care for pwme. APPG folded but we did get Carol Monhagan etc out of it!!
I submitted a case study to the inquiry which I would be happy to share. Tony Crouch was also involved and he's on the GDG.
https://www.actionforme.org.uk/uploads/pdfs/close-to-collapse-report-UPDATED.pdf
https://www.meassociation.org.uk/20...-from-meeting-held-on-thursday-17-march-2016/
 
1. Strassheim, Victoria Jane; Sunquist, Madison; Jason, Leonard A; Newton, Julia (2018).
"Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England" (PDF).
bmjopen.bmj.com. doi:10.1136/bmjopen-2017-020775.
https://bmjopen.bmj.com/content/bmjopen/8/9/e020775.full.pdf

Key points
- a few home visits
- some couldn't do any questionnaires
- not everyone could stand
- proof of inability to stand in one person
- initial responses from survey advertised by charity showed many with CF not CFS or ME

2. Cox, Diane L.; Findley, Leslie J. (2000). "Severe and Very Severe Patients with Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome. 7 (3): 33–47. doi:10.1300/j092v07n03_04. ISSN 1057-3321.

Key point - many discharged from hospital with alternative diagnosis (which ones is not stated, if they improved is not stated)
- I'm a bit dubious of this for including those that may not have met the criteria to start with OR was discharged under different diagnosis a way of claiming success (patient has CFS & POTS but discharged as POTS only?)
https://www.tandfonline.com/doi/abs/10.1300/J092v07n03_04
 
3. Wiborg, Jan F.; van der Werf, Sieberen; Prins, Judith B.; Bleijenberg, Gijs (May 2010). "Being homebound with chronic fatigue syndrome: A multidimensional comparison with outpatients". Psychiatry Research. 177 (1-2): 246–249. doi:10.1016/j.psychres.2010.02.010.
https://linkinghub.elsevier.com/retrieve/pii/S0165178110000569

4. Mihelicova, Martina; Siegel, Zachary; Evans, Meredyth; Brown, Abigail; Jason, Leonard (Dec 2016). "Caring for People with Severe Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis of Parents' Experiences". Journal of health psychology. 21 (12): 2824–2837. doi:10.1177/1359105315587137.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/

Key points - stigma and bad treatment from doctors, medical abuse

5. Strassheim, Victoria; Lambson, Rebecca; Hackett, Katie L.; Newton, Julia L. (2017-06-19). "What is known about severe and very severe chronic fatigue syndrome? A scoping review". Fatigue: Biomedicine, Health & Behavior. 5 (3): 167–183. doi:10.1080/21641846.2017.1333185
https://www.researchgate.net/public...ere_chronic_fatigue_syndrome_A_scoping_review

Julia Newton is one of action for ME's medical advisors

6. Strassheim, Victoria Jane; Sunquist, Madison; Jason, Leonard A; Newton, Julia (2018). "Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a two-phase community pilot study in the North East of England" (PDF). bmjopen.bmj.com.

Julia Newton is one of Action for ME's medical advisors

7. Jason, Leonard A.; Evans, Meredyth; Brown, Molly; Porter, Nicole; Brown, Abigail; Hunnell, Jessica; Anderson, Valerie; Lerch, Athena (2011). "Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity". Disability studies quarterly : DSQ. 31 (1).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181109/
- Prove that the Chalder Fatigue Scale and some others can tell the different between severe and very severe, or severe and moderate
_____________________________
More on here including reports from
charities
https://www.me-pedia.org/wiki/Severe_and_very_severe_ME
 
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