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ME/CFS

Patient Lived Experience

YorSexualHealth

York & Scarborough Teaching Hospitals

NHS Foundation Trust

Wed 12 March 2025

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Agenda:

About ME/CFS

What can I do?

How can I learn more?

‘Chronic Fatigue Syndrome’

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https://wellcomecollection.org/stories/living-with-me

Dr Nina Muirhead

”Doctors with ME”

Pippa - York http://lifeofpippa.co.uk

Daniel

PEM podcast

Photo credit Jeremy Jeffs

Deborah - Scarborough

Hannah

Here are some other people you’re going to hear about along the way…

Pippa Stacey (York ‘Life of Pippa’ blog, and author of books about life and university with chronic illness),

Deborah Seymour - Scarborough - bedbound and living in a darkened room for 2 years, cared for by her elderly mother.

Hannah Turner (centre);

Daniel Moore (host of Post Exertional Mayonnaise podcast)

- both featured in Welcome Collection of stories of living with ME - by photographer Jeremy Jeffs who has ME and is part of his local support group.

Whitney Dafoe (son of Dr Janet Dafoe and Prof Ron Davis, Stanford Open Medicine Foundation, researching ME to find treatments),

Dr Nina Muirhead (founding member of Doctors with ME, did not know about or understand the illness and has now created an education module for HCPs)

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Doctors with ME April 2022 audit: https://doctorswith.me/home/education/

Dr Nina Muirhead:

"after seeing thirteen different doctors and undergoing multiple tests and investigations,
not only was I given a diagnosis of a condition that I didn’t know about or understand,
it was an illness I didn’t believe in."

https://www.rcp.ac.uk/news-and-media/news-and-opinion/do-you-really-believe-in-me/

Medical training about ME/CFS is lacking

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About ME/CFS - some questions:

What is ME/CFS?

What is the impact of ME on daily life?

How many people have ME?

Take a moment to consider & note your responses -

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1a) ME/CFS is a complex, chronic medical condition affecting multiple body systems

Immune system dysregulation
Mitochondrial dysfunction and metabolic disturbance
Dysautonomia and nervous system dysregulation
Neuro-inflammation and central nervous system abnormalities
Gut microbial dysbiosis
Endothelial dysfunction
Genetic and epigenetic factors
Hypothalamic-pituitary-adrenal axis, cortisol & hormone dysregulation
Vascular dysfunction and micro-clotting

What does this mean?

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1a) About ME/CFS - the NICE guideline 2021 NG206

Debilitating fatigue

Worsened by physical, cognitive, emotional or social activity
Caused by activity that’s not excessive
Not relieved by rest

Post Exertional Malaise (PEM)

Delayed onset by hours or days
Disproportionate to the activity
Prolonged recovery may last hours, days, weeks or longer

Sleep problems

Wake feeling exhausted, flu-like, stiff
Broken or shallow sleep
Altered sleep pattern or hypersomnia

Cognitive difficulties (‘brain fog’)

Word finding difficulties
Short-term memory problems
Difficulty concentrating or multitasking

Suspect ME/CFS after 6 weeks (adults) or 4 weeks (children and young people) when ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels.

Advice if ME/CFS is suspected:

Advise person not to use more energy than they perceive they have.

Advise not to 'push through' their symptoms but to to rest and convalesce as needed.

[NICE guideline 2021] There is no biomedical marker or simple test for ME/CFS. So we need to be alert to the pattern of signs and symptoms.

Suspect ME/CFS if:

the person has had all of the persistent symptoms in box 2 for a minimum of 6 weeks in adults and 4 weeks in children & young people and
the person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels and
symptoms are not explained by another condition.

The following symptoms may also be associated with, but are not exclusive to, ME/CFS:

orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
neuromuscular symptoms, including twitching and myoclonic jerks
flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
intolerance to alcohol, or to certain foods and chemicals
heightened sensory sensitivities, including to light, sound, touch, taste and smell
pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

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1a) About ME/CFS - symptoms, comorbidities and severity

What additional symptoms are common with ME?

What comorbidities commonly occur with ME?

What is the range of severity of ME?

Listen to some lived experiences -

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1b) Lived experience

2018/19: Started PhD.

Unexplained excessive fatigue forced me to stop all exercise & give up coaching.

2013/15:

Mother of 2, happy wife, active triathlon & swim coach, tri coach educator & MSc studies

Migraines?

2021:

Crash left me bed bound for 3 weeks.

Forced to give up Uni work & pause PhD due to cognitive issues.

2022-25:

Self-led research about ME.

Seeking remedies:

Nutrition & hydration (POTS)

Electrolytes &

Supplements

HR & HRV daily monitoring

HRT &

Testosterone

Some blood test abnormalities - none were investigated:

Haemoglobin low

Calcium high

Phosphate low

White blood cells mix

Neutrophils low

Bilirubin high

Diurnal Cortisol pattern

2013-2021:

Blood tests mostly “normal” - directed to psychology & antidepressant medications.

Kept getting worse - antidepressant medications increased to max dose 375 mg/day Venlafaxine (SNRI).

Still getting worse - addition of a second antidepressant medication suggested (Mirtazapine 10 mg/day).

2022: Took 12 months of gradual reduction & bad withdrawal effects to come off 375mg/day Venlafaxine.

2023: HRT (oestrogen gel and progesterone capsules) + started testosterone. Caused bleeding & had to adjust dosages, some improvement.

2024: Appointment with cardiologist Dr Sanjay Gupta, York for POTS - Jan 2024 - prescribed Ivabradine 2x 2.5mg/day.

2025: As at March 2025 still awaiting ‘3 month’ follow-up appointment.

I look and sound fine here today!

- but what you don’t see is that my life is severely reduced - to avoid PEM I’ve had to adjust to leaving my house only once or twice a week.

Preparing this presentation took me a week and I have had headaches and other symptoms as a consequence.

- I expect to be bed bound for a few days with the PEM following the exertion.

- I’m not usually out of bed at this time of day, let alone dressed and standing up in front of people. My husband Steve can attest to that.

He manages all of the household chores, looks after me, and I consider myself incredibly fortunate to have his unwavering support.

My response to the Question, “how much of what you could do before you were ill can you do now?”

Maybe 30%, my husband says maybe 25%, substantial reduction - and I have what is termed “mild/moderate” ME.
It was less than this for about 2 years, I’ve seen some improvement with 2 years of complete rest and am privileged to be able to adapt in that way because I’m financially secure and have good family support.

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1b) Lived experience

https://www.bbc.co.uk/news/articles/c86w32en1evo

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1b) Lived experiences of ME/CFS

ME/CFS varies from person to person, fluctuates over time and changes unpredictably*

Doctors with ME: Dr Nina Muirhead’s story https://www.youtube.com/watch?v=GJioH_w807E

Tina Rodwell’s story of her teenage son Angus:

https://mecfs-med-ed.org/2023/11/11/a-mother-of-a-child-with-severe-me-cfs-describes-troubling-experiences-of-medical-harm-and-accusations-of-abuse-in-healthcare-settings/

Whitney Dafoe - extremely severe ME: a personal account: https://www.mdpi.com/2227-9032/9/5/504

Father Prof Ron Davis runs research projects at Stanford University and the Open Medicine Foundation.

Stories of living with ME: Pippa in York; Julie in Sheffield, Daniel in Morpeth�https://wellcomecollection.org/stories/living-with-me

Short videos to watch: Dialogues for a neglected illness https://www.dialogues-mecfs.co.uk/

ME Association: 3 patients’ stories https://meassociation.org.uk/2020/03/three-me-patients-reveal-their-daily-struggle-with-the-crippling-condition-02-march-2020/

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Common symptoms:

Low libido

Sexual dysfunction

Increased urinary frequency

Worsened periods

Overactive bladder

Weight gain

Migraines

Alcohol intolerance

Temperature dysregulation

Cognitive difficulties

Seizures

Common comorbidities:

Endometriosis*

& fertility problems

IBS, Crohn’s Coeliac

POTS and OI

MCAS (mast cells)

Fibromyalgia

Hypermobility

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1b) Impact of ME on functional capacity

FUNCAP27 and the Visible app

a validated questionnaire that measures Functional Capacity across 8 areas and for each activity asks:

- What are the consequences for you if you perform this activity?

- To what extent does this affect how much else you can do?

Score of 6 is normal health.

Quality of life studies: ME/CFS

People with ME/CFS have a lower quality of life on average than

multiple sclerosis, chronic kidney failure, or congestive heart failure.

Mean overall health status for pw ME

was 36 % [Full health = 100%]

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1c) Prevalence of ME in York & Scarborough THFT?

Q: How many people does Y&STHFT provide healthcare services to?

Q: How often do you see patients who (mention they have) ME?

Q: How many people have ME?

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1c) Prevalence of ME/CFS

York & Scarborough Hospitals NHS FT provides services to 800,000 people* [Source: https://www.yorkhospitals.nhs.com]

Y&STHFT serves 1.2% of UK population.

Using recognised prevalence data from the major disease charities:

Lower estimate 0.4% prevalence implies in Y&SHT 3,200 people have ME. (this prevalence data is from >20 years ago).

More recent estimate (AfME) 730k, 1.1% implies 8,800 people have ME

Compare with MS 0.22% prevalence implies 1,760 people have MS.

Compare with Parkinsons 0.22% implies 1,760 people Parkinsons

Compare with Type 1 Diabetes 0.69% imples 5,540 have Type 1 Diabetes

Compare with Lupus 0.05% implies 400 people have Lupus

Rheumatoid Arthritis 0.8% 6,400

Epilepsy 1% 8,000

Crohn’s disease and ulcerative colitis 0.6% 4,800

https://www.actionforme.org.uk/get-information/what-is-me/how-many-people-have-me-in-the-uk/#:~:text=There%20are%20an%20estimated%201.3,the%20hallmark%20symptom%20of%20ME.

64k women actively experiencing menopause at any one time within 800k population of the Trust.
25k women (estimated) to go through cervical screening annually at YSTHFT (if all eligible females attend)

[based on number of females aged 25-64 amongst 800k population is 25% = 100k; in Humber & NY approx 75% attend screening every 3 years]

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1c) Prevalence of ME/CFS

Outer circle includes people with Long Covid that experience ME-like symptoms including PEM.

https://www.actionforme.org.uk

York & Scarborough Hospitals NHS FT provides services to 800,000 people* [Source: https://www.yorkhospitals.nhs.com]

Y&STHFT serves 1.2% of UK population.

Using recognised prevalence data from the major disease charities:

Lower estimate 0.4% prevalence implies in Y&SHT 3,200 people have ME. (this prevalence data is from >20 years ago).

More recent estimate (AfME) 730k, 1.1% implies 8,800 people have ME

Compare with MS 0.22% prevalence implies 1,760 people have MS.

Compare with Parkinsons 0.22% implies 1,760 people Parkinsons

Compare with Type 1 Diabetes 0.69% imples 5,540 have Type 1 Diabetes

Compare with Lupus 0.05% implies 400 people have Lupus

Rheumatoid Arthritis 0.8% 6,400

Epilepsy 1% 8,000

Crohn’s disease and ulcerative colitis 0.6% 4,800

https://www.actionforme.org.uk/get-information/what-is-me/how-many-people-have-me-in-the-uk/#:~:text=There%20are%20an%20estimated%201.3,the%20hallmark%20symptom%20of%20ME.

64k women actively experiencing menopause at any one time within 800k population of the Trust.
25k women (estimated) to go through cervical screening annually at YSTHFT (if all eligible females attend)

[based on number of females aged 25-64 amongst 800k population is 25% = 100k; in Humber & NY approx 75% attend screening every 3 years]

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What treatments and support are available for ME?

NICE 2021: There are currently NO treatments

DO NOT offer graded exercise therapy (GET) or CBT as curative.

Stop, Rest, Pace

Advise not to “push through” symptoms, to stay within energy limits, rest & pace.

Pacing is a management strategy to reduce risks of PEM.

Repeated PEM can cause deterioration in baseline health status.

Treat symptoms where possible - pain relief, comorbidities

Manage energy - aids, supports, lots of rest breaks, help where available.

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Daily life experiences in healthcare

Cambridge University, March 2025.

A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

NICE guideline, 2021.

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Managing daily life with ME

Pacing is budgeting daily energy use.

To avoid PEM: stay within “pace points”

stay below Anaerobic Threshold
My healthy AT was 140bpm, is now 96 bpm
I exceed it when I stand up

Symptomatic relief:

OTC pain relief & epsom salts baths
Electrolytes & fluids
Antihistamines
Dietary supplements

https://www.lifeofpippa.co.uk

https://www.makevisible.com

My Facebook post from 12 Jan 2025 (set as public so anyone can read & see related images) - details have been verified by Prof Todd Davenport of Workwell Foundation as a very good explanation.

I use an app called Visible and wear a heart rate monitor that tracks my HR continuously.

I used to track heart rate zones for training when I did triathlon. Friends who train will be familiar with this. In doing so we pay attention to Anaerobic Threshold.

AT is the turning point where the body switches primary energy supply from aerobic (body creates energy in the presence of oxygen) to anaerobic (body creates energy without oxygen because you can’t breathe in enough air fast enough to process it in time).

I can’t remember what my AT used to be, but I seem to remember it was somewhere around 140bpm-ish

(it’s often calculated as 80% of max HR, which in turn is roughly calculated as 220-age, and 0.8x(220-50)=136 so that’s about right for me a few years ago).

My AT is now 93bpm (has since adapted to 96 as I’ve improved a little in recent weeks).

Yes you read that right!

My body’s aerobic energy system is broken. So my body switches to anaerobic energy systems prematurely.

Before ME I would be able to run, cycle and swim pretty well at a steady pace without going above threshold - often a training target.

Once you go above threshold your body starts to make lactate faster than it can process it. You get out of breath, everything feels harder, and for the next day or two you’ll experience DOMS (delayed onset muscle pain), sore legs etc.

Now, with ME I face a greater risk if I go over my threshold. The risk that my body will be further damaged and I won’t be able to recover back to my normal baseline.

So I have to limit going over threshold as much as possible. I have to keep my HR under 93bpm.

Sometimes I exceed that just standing up!

So I have to spend most of my day sitting or lying down.

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About ME/CFS - recap.

What have you learnt about ME?

What has surprised you?

What questions do you have?

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Agenda

About ME/CFS

What can I do?

How can I learn more?

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2. What can I do?

Supporting patients

Empowering patients

Signposting patients

Be an ally to people with ME - advocate for better services

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2a) Supporting patients

Listen and believe them, be alert to signs and symptoms.�Do no harm: Early advice to stay within energy envelope is vital to prevent worsening.

Ask them what reasonable adjustments would help them.

Dim lights, quiet area, one thing at a time, FFP3 mask, not standing for long

Join the Sunflower ‘hidden disability’ network

Raise a digital reasonable adjustment flag. https://digital.nhs.uk/services/reasonable-adjustment-flag

Considered use of language (reference MERuk info)

Improving access - Home visits? Home tests? Timing of appointments?

Written note of key points to take away from consultations to aid patient memory.

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2b) Empowering patients:

Signpost to NICE guideline and key information to raise with GP.

Advise keeping a diary of activities and symptoms to identify triggers and patterns.

Measurements at home - active stand test - described here:

https://www.standinguptopots.org/livingwithpots/pots-symptoms

Collect data from wearable technology (HR and waking HRV using apps)

Can you add observations to patient notes for other health care staff?

Improve patient awareness of NHS digital reasonable adjustment flag.

Improve awareness of SNOMED classification for accurate prevalence recording.

Ask what % of what you could do before you were ill, can you do now?

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2c) Signposting patients:

Support:

York ME Community - Facebook Group (330 members, up 20% in last 9 months)

Information:

The ME charities - Action for ME; ME Association; ME Research UK; 25% Group

Advocacy:

?? what agencies operate locally to support people with severe ME?

ME/CFS services:

Yorkshire Fatigue ME/CFS Service, York (City Health Care Partnership).

Young Person’s Clinic (Adolescent) Dr Jo Mannion, York Hospital.

Leeds & WY ME/CFS Service, Seacroft Hospital, Leeds.

South Tees CFS/ME Service James Cook Hospital, Middlesbrough.

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2d) Be an ally to people with ME - for better healthcare

@ThereForME_UK #FundThePlan

Dr Binita Kane - Manchester; Dr Rachel Duncan - Newcastle; MPs and APPG

Physios for ME

Dr Nicola Clague-Baker - Liverpool, Karen Leslie - Sheffield

Local ME specialists:

Dr Vikki McKeever (GP with SI, Yorkshire Fatigue Clinic), also OT team at YFC.

Dr Sanjay Gupta, cardiologist, York Hospital (POTS specialist)

Ask about local ICB plans to set up clinical pathway and services for people with severe ME?

Please encourage, inform and educate your colleagues.

ME has no licensed treatments but there are things that you can do to improve patient care:

• Lerna provides a free CPD accredited 1-hour module on ME [3] developed with experts via the ME Association.�• For a longer course, Stripy Lightbulb CIC [4] offers CPD accredited e-learning courses on ME for healthcare professionals.�• Read key pieces of clinical literature such as Montoya et al [5] and Baxter et al [6] on the life-threatening malnutrition in Very Severe ME to better understand how to care for the most vulnerable ME patients.�• Consult the concise review for clinicians published by Grach et al in 2023 [7] in Mayo Clinic Proceedings (providing continued medical education credits).�• For physiotherapists, the book “A Physiotherapist’s Guide to Understanding and Managing ME/CFS” [8] is a must-read.

https://www.bmj.com/content/383/bmj.p2372/rr

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3. How can I learn more?

Education modules & training providers

3 New NHS e-learning modules

NICE guideline 2021 (NG 206)

Dr Nina Muirhead

Sally Callow

MEFoggyDog

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Books

ME Association

Physios For ME

Dr Sarah Myhill

Pippa Stacey

Dr Hng

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Some good resources:

Websites:

Bateman Horne Centre https://batemanhornecenter.org/education/me-cfs/

Physios For ME https://www.physiosforme.com

Workwell Foundation guidance for pacing with a HR monitor

https://workwellfoundation.org/pacing-with-a-heart-rate-monitor-to-minimize-post-exertional-malaise-pem-in-me-cfs-and-long-covid/

Doctors with ME https://doctorswith.me/home/education/

Podcasts

Daniel Moore PEM POD - Post Exertional Mayonnaise https://podcasts.apple.com/gb/podcast/post-exertional-mayonnaise/id1689368709

Long Covid Podcast with Prof Todd Davenport (@sunsopeningband on Twitter)

https://podcasts.apple.com/gb/podcast/long-covid-podcast/id1580981740?i=1000664021523

Youtube

Broken Battery https://www.youtube.com/@BrokenBattery

Gez Medinger https://www.youtube.com/channel/UCln_SCEd4JiGkHIUZd1VlXw

Newsletters & information for healthcare practitioners:

Sign up to the ME Association’s newsletter and resources for health care practitioners.

Add links… Action for ME (Josh’s email); MEA Newsletter for HCPs

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Some social media accounts to follow

@NickyProctor (Twitter & Bluesky)

@MEResearchUK (Facebook, Twitter, BlueSky)

@ThereForME (substack, Facebook, Twitter, BleSky, Insta)

@ActionForME (Facebook, BlueSky)

@MEAssociation (Facebook, Twitter)

@ME Foggy Dog & @StripyLightbulb (Twitter)

@Broken Battery (youtube, Twitter)

@TomKindlon (Twitter)

@DafoeWhitney (Twitter, Facebook)

@DoctorsWithME (Twitter)

@PhysiosForME (Twitter)

@MEActNetUK (Facebook, Twitter)

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Closing quiz

About ME/CFS

What will you do?

How will you learn more?

Any further questions?

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Closing quiz

About ME/CFS

What will you do?

How will you learn more?

What does ME stand for?
Which Dr who got ME wrote the Learna module to educate others?
What are the 4 core symptoms of ME?
Name 3 further common symptoms of ME.
Name 3 common comorbidities of ME.

List 5 things you can do to to help patients.
What can you do to empower patients?
Why is this important?
What can/will you do to help pwME?
How can you help me to educate more healthcare practitioners about ME/CFS?

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References:

Lived experience stories:�https://wellcomecollection.org/stories/living-with-me

http://lifeofpippa.co.uk

Short videos to watch: Dialogues for a neglected illness https://www.dialogues-mecfs.co.uk/

Whitney Dafoe - a personal account: https://www.mdpi.com/2227-9032/9/5/504

Tina Rodwell’s story of her teenage son Angus: https://mecfs-med-ed.org/2023/11/11/a-mother-of-a-child-with-severe-me-cfs-describes-troubling-experiences-of-medical-harm-and-accusations-of-abuse-in-healthcare-settings/

Doctors with ME: Dr Nina Muirhead’s story https://www.youtube.com/watch?v=GJioH_w807E

ME Association: 3 patients’ stories https://meassociation.org.uk/2020/03/three-me-patients-reveal-their-daily-struggle-with-the-crippling-condition-02-march-2020/

NICE guideline:

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

https://www.meresearch.org.uk/what-makes-me-cfs-so-debilitating/

FUNCAP 55 and FUNCAP 27 https://pmc.ncbi.nlm.nih.gov/articles/PMC11204454/

https://www.mdpi.com/2077-0383/13/12/3486

Quality of life studies

https://pmc.ncbi.nlm.nih.gov/articles/PMC11356561/

https://researchonline.lshtm.ac.uk/id/eprint/4647025/1/Functional%20Status%20and%20Well-Being%20in%20People%20with%20Myalgic%20Encephalomyelitis.pdf

Prevalence:

https://www.actionforme.org.uk/get-information/what-is-me/how-many-people-have-me-in-the-uk/#:~:text=There%20are%20an%20estimated%201.3,the%20hallmark%20symptom%20of%20ME.

Prevalence for other illnesses are taken from relevant charity websites - all figures are provided in speaker notes on prevalence slides.

BMJ best practice notes

https://bestpractice.bmj.com/topics/en-gb/277

BMJ rapid response - what health care practitioners can do:

https://www.bmj.com/content/383/bmj.p2372/rr

Grasch et al, 2023 - diagnosis and management of ME

https://pubmed.ncbi.nlm.nih.gov/37793728/

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Source: Medical News Today

Increased urinary frequency

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Cortisol

Cortisol is a steroid hormone

produced by the adrenal glands.

It regulates a wide range of body processes Effects include controlling blood sugar levels and thus regulating metabolism,

acting as an anti-inflammatory,

influencing memory formation,

controlling salt and water balance,

influencing blood pressure.��Dehydroepiandrosterone (DHEA)

is a hormone produced by the adrenal glands. The body uses DHEA to make androgens and estrogens, the male and female sex hormones.

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Post exertional

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More information about research if interested to follow up:

Immune system dysregulation
Mitochondrial dysfunction and metabolic disturbance
Dysautonomia and nervous system dysregulation
Neuro-inflammation and central nervous system abnormalities
Gut microbial dysbiosis
Endothelial dysfunction
Genetic and epigenetic factors
Hypothalamic-pituitary-adrenal axis, cortisol & hormone dysregulation
Vascular dysfunction and micro-clotting