Machine learning analysis of SF-36 Health questionnaire could be as diagnostic tool for ME/CFS

Spanish researchers looked for an alternative to using an expensive and invasive exercise test (CPET) as a diagnostic biomarker in patients with ME/CFS. They found that using Machine Learning to analyse the answers to the Short Form-36 (SF-36) questionnaire could predict oxygen consumption and reveal sub-types.

Unsupervised cluster analysis reveals distinct subtypes of ME/CFS patients based on peak oxygen consumption and SF-36 scores, by Marcos Lacasa, Patricia Launois, Ferran Prados, José Alegre, Jordi Casas-Roma in Clinical Therapeutics Oct 4, 2023 [doi.org/10.1016/j.clinthera.2023.09.007]

HIGHLIGHTS

• ME/CFS is a disabling chronic disease with a lack of diagnostic tests.
• Oxygen consumption is a possible biomarker of CFS.
• O2 consumption allows classifying patients status according to the Weber’s classification.
• A worse Weber’s classification infers a worse outcome on the SF-36 questionnaire.
• Unsupervised machine learning is a powerful tool for analyzing data.

Research abstract

Purpose
Myalgic encephalomyelitis, commonly referred to as chronic fatigue syndrome (ME/CFS), is a severe, disabling chronic disease and an objective assessment of prognosis is crucial to evaluate the efficacy of future drugs. Attempts are ongoing to find a biomarker to objectively assess the health status of (ME/CFS), patients.

This study therefore aims to demonstrate that oxygen consumption is a biomarker of ME/CFS provides a method to classify patients diagnosed with ME/CFS based on their responses to the Short Form-36 (SF-36) questionnaire, which can predict oxygen consumption using cardiopulmonary exercise testing (CPET).

Methods
Two datasets were used in the study. The first contained SF-36 responses from 2,347 validated records of ME/CFS diagnosed participants, and an unsupervised machine learning model was developed to cluster the data. The second dataset was used as a validation set and included the cardiopulmonary exercise test (CPET) results of 239 participants diagnosed with ME/CFS. Participants from this dataset were grouped by peak oxygen consumption according to Weber’s classification.

he SF-36 questionnaire was correctly completed by only 92 patients, who were clustered using the machine learning model. Two categorical variables were then entered into a contingency table: the cluster with values {0,1} and Weber classification {A, B, C, D} were assigned. Finally, the Chi-square test of independence was used to assess the statistical significance of the relationship between the two parameters.

Findings
The results indicate that the Weber classification is directly linked to the score on the SF-36 questionnaire. Furthermore, the 36-response matrix in the machine learning model was shown to give more reliable results than the subscale matrix (p − value < 0.05) for classifying patients with ME/CFS.

Implications
Low oxygen consumption on CPET can be considered a biomarker in patients with ME/CFS. Our analysis showed a close relationship between the cluster based on their SF-36 questionnaire score and the Weber classification, which was based on peak oxygen consumption during CPET. The dataset for the training model comprised raw responses from the SF-36 questionnaire, which is proven to better preserve the original information, thus improving the quality of the model.

ME/CFS and pregnancy: a systematic review

When reviewing studies of pregnancy in women living with ME/CFS, researchers from Newcastle University found the impact of pregnancy on ME/CFS severity varied within and between the small number of relevant studies.

The importance of both individualised care, and of healthcare professionals learning about ME/CFS in relation to family planning and pregnancy was however highlighted.

There are currently no evidence-based guidelines for management of ME/CFS and pregnancy. People with ME/CFS, their partners and healthcare professionals are unable to make informed, evidence-based decisions around family planning, pregnancy, labour and birth.

“More research is urgently needed, considering all aspects of pregnancy and ME/CFS for patients and healthcare professionals. In particular, research should explore what would constitute high-quality care for those with ME/CFS relating to pregnancy and family planning.”

Better quality research is also needed, with larger sample sizes, healthy control groups, clearly defined research questions and a standard diagnostic criteria for ME/CFS.

Identifying, synthesising and appraising existing evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review, by Emma Slack, Katrina Anne Pears, Judith Rankin, Julia L Newton, Mark Pearce in BMJ Open Volume 13, Issue 10, 2023

Primary fatigue service, Cwm Taf MUHB

Cwm Taf Morgannwg University Health Board (CTMUHB) is the first health board in Wales to launch a service for post viral illness, which includes both ME/CFS and Long COVID. Who is the service for?

Anyone who lives in Bridgend, Merthyr Tydfil or Rhondda Cynon Taf with a diagnosis of ME/CFS or Long COVID can be referred to the Primary Fatigue Service (PFS).  You are advised to speak to your GP if you suspect you might have either of those conditions and they will do some investigations and blood tests to reach a diagnosis. They and other health professionals (consultant, nurse practitioner, occupational therapist, physiotherapist etc) can also refer you. Unfortunately you cannot refer yourself.

What will the service offer? 

Assessment – To begin with you will talk to a therapist to assess how your symptoms affect you, what you already do to manage them and what you would like to be able to do with your life. You will hopefully agree a plan of action. This could take up to an hour by phone, in a clinic, or if necessary, at home. The session will be tailored to the individual.

‘Treatments’ – you might be offered one to one sessions with either a physiotherapist or occupational therapist. A GP and psychologist are also available to advise if necessary. The length of the sessions will be tailored to your needs, up to 60 mins, and could be via the phone, in a clinic or in the home.

The approach will vary depending on the person, but it will often include support to deal with PEM such as how to find a baseline and get out of a boom/bust cycle, to pace and balance the energy envelope, to plan and prioritise.

Camau management programme – this series of sessions will take place in community venues in Bridgend, Pontypridd and Merthyr, and also online. They will introduce tools to help you manage your condition and include topics such as sleep, nutrition and finding some pleasure and quality of life. The aim is to help you gain the skills and knowledge to self-manage and live well with your condition.

Starting date?

The Service was launched on Monday 1 October 2023. GPs began to refer patients before that date so there could quickly be a waiting list!

WAMES have shared the needs, wishes and experiences of people with ME/CFS with the Service Team, but have not been consulted on the nature of the sessions they will offer. The organisers however are keen to get feedback on their service and the website. They emphasis that it is ‘a work in progress’.

We would be interested to hear the experiences of anyone who uses the Service. We will pass all comments, positive and negative, to the Service anonymously, unless specifically asked not to. In this way we can still influence how the service progresses and ensure that it meets the needs of people with ME/ CFS.  Contact jan@wames.org.uk

Find out more: Primary Fatigue Service / Gwasanaeth Blinder Sylfaenol

Language can hurt

 

“The way language is used can frustrate or upset people who have ME/CFS.”

This is one of the discoveries made by the Working Group who have developed the draft English ME/CFS Delivery Plan:

My full reality: the interim delivery plan on ME/CFS

“This insight comes from personal experience, gathered by people with personal experience who have participated in the development process for the delivery plan on ME/CFS. The evidence has not been validated by the government but represents a flavour of what we have heard through our meetings and workshops.”

They give examples of how life with ME/CFS is often misunderstood and can lead to hurtful comments:

Chronic Fatigue Syndrome as an alternative description of ME/CFS

“I’d love it if I could stay in bed all day“

“You’re just lazy”         “Yeah, I’m very tired too“

Normal experience of illness is that people recover

“My mum’s friend had that and she recovered“

“You should aim for full recovery“

“We can get you back to normal with some time and effort“

The misconception that ME/CFS is a mental health condition, ‘all in the mind’ or that you can get better or overcome symptoms by the way you think

“Maybe you should ask your doctor to put up your dose of antidepressants“

“If you thought differently, you would get better“

“It helps to have a positive attitude“

The fact that there is no medical test to prove that someone has ME/CFS

“good news – the tests say there is nothing wrong with you“

“you are lying“

“maybe you are depressed about something“

‘Post-exertional malaise’ or PEM is a technical term which most people will not have heard of

“You did nothing yesterday, why are you still in bed?“

Symptoms of ME/CFS cannot be seen

“You look normal”       “You just don’t want to work“

“You don’t need the wheelchair because I saw you walk last week“

“No, you can’t have a home visit“

People with mild or moderate ME/CFS can manage their energy to do something out of their ordinary routine, as long as they rest before and afterwards as necessary

“How can you go for lunch with someone, but you can’t go to work for 8 hours?“

“The tests are only available in the mornings“

“We need you to commit to attending weekly“

Read the full report: Language use in relation to ME/CFS – a personal perspective

500 miles for ME – Rob raises £1,00 for WAMES

Rob began his challenge in June –  to walk 500 miles for ME over the course of 100 days, to greet the sunrise at Paxton’s Tower, near Carmarthen.

He is now three quarters of the way along. He has faced a wide range of weather, and a knee injury, and been joined by friends and family.

He “feels lucky to be doing something people with ME can’t” as so many are in the “slow lane”, [though Ffion in her poem reminds us that some of us are not even in the slow lane but “on the hard shoulder!”]

We are grateful to people who have supported Rob and donated:

WAMES  £1,000

ME Research UK  £1,343

Invest in ME Research £1,230

And Rob’s fundraising challenge is not over yet! Donate here

He is also taking time to record interviews, “raising awareness and educating about this debilitating disease that has for too long been neglected, resulting in #millionsmissing from their own lives.” Herre is a clip from his interview with Jan Russell about the work of WAMES in Wales.

So far there have been 3 Discussions at Dawn with

• Jan Russell, chair of WAMES
• Dr Nina Muirhead    Doctors with ME
• Karen Leslie, from Physios for ME

Rob has taken on this challenge on top of caring for his youngest son, who is currently bedbound. Fortunately he has the support and technical expertise from other family members, to whom we can thank for his online presence:

500 miles for ME web page      Discussions at dawn

Facebook: 500miles4ME      Twitter/X: @500miles4ME 

MEA Count ME In survey of  health and social care for ME/CFS and Long COVID 

7,303 people in the UK completed the ME Association’s survey:

• 85% (6,208 people) had a diagnosis of ME/CFS
• 10% (730) had a diagnosis of Long Covid
• 5% (365 people) were undiagnosed but experienced the 4 core symptoms of ME/CFS

In general, experiences with the NHS were more likely to be rated poor than good and were worse for ME/CFS than Long Covid:

• Only 8% of those with ME/CFS rated the NHS as good or excellent, and with Long Covid it was 15%.
• Top barriers to good care were long waiting times, not being listened to or believed, and ineffective treatments.
• Every region in the UK scored badly. More than 50% of regions received a very poor or poor opinion. Wales, Northern Ireland, West Midlands, Southeast England, and Scotland received over 65%.
• There are many barriers to receiving a timely diagnosis – the main ones being that people were diagnosed with a different condition, not being referred to specialists by GPs, long waits for tests or referrals, and not being taken
  seriously.

In Wales

69% of survey participants said that the support they had received from the NHS for ME/CFS was poor or very poor.

Only 35% of Welsh participants found the specialist services for ME/CFS to be good or excellent [We don’t know what these ‘specialist services’ in Wales were!]

WAMES will be bringing these results to the attention of the Health Boards in Wales as they work to develop services for people with ME/CFS. Please let us know if you see any improvement in the service you get from GPs or other health and social care professionals. Contact jan@wames.org.uk or any member of the team.

#ImplementNICE mecfs

Read the full MEA survey results

Disbelief and Disregard in health and social care for people with Energy Limiting Conditions (ELC) Part 2

A research project into Energy Limiting Conditions (ELC) wanted to understand the problems people experience getting the support they need from health and social care services.

Part 2 of the research highlights the psychological harms experienced by the participants due to discrimination.

“disbelief made me feel worthless”: the impact of poor healthcare on mental health and wellbeing

Disbelief and Disregard Damages People’s Mental Health

Experiences of “medical gaslighting” left participants feeling traumatised, distressed, and depressed. Participants explained how being disbelieved when they sought medical help made them
question their “value”, core beliefs and self-knowledge.

Disbelief and Avoidance of Medical Care

Being disbelieved erodes the trust that patients have in healthcare professionals. Routine disbelief and disregard become routine experiences, they become reluctant to seek help and they begin to avoid medical encounters as much as possible, leading to worsening health.

Impact of Disbelief on Relationships with Friends and Family

In addition to the breakdown in relationships with healthcare professionals, participants also explained how the disbelief of healthcare professionals, amplified through the media, has a negative impact on relationships with friends and family.

Recommendations – A pathway to Equality:

• The medical profession must listen and believe
• Better patient pathways and quality of care are needed for people with ELC.
• Training of all health, social care, and welfare professionals must include information about energy limiting conditions.
• Institutional sexism in health, social care and welfare systems must be tackled along with racism, ageism, homophobia, ableism, transphobia, fatphobia etc.
• Simpler ways for people with ELC to access support in welfare, social care, employment and education are needed.
• People with ELC must be part of conversations about policy and practice that affects them, and equal partners in research on ELC.

Read more about the psychological harms

An introduction to ELCs & the Disbelief and Disregard project

Disbelief and disregard project website

Disbelief and Disregard in health and social care for people with Energy Limiting Conditions (ELC) Part 1

A research project into Energy Limiting Conditions (ELC) wanted to understand the problems people experience getting the support they need from health and social care services.

Project 1: Disbelief and Disregard: The Gendered Experiences of Energy Limiting Chronic Illnesses

This project looked at the experiences of health and social care for people who identify as women, trans men and non-binary people with ELCs.

According to estimates by the Department for Work and Pensions (DWP), 1 in 3 disabled people in the UK experienced impairments in stamina/breathing/fatigue.

These experiences are shared by people living with a range of conditions, including neurological, musculoskeletal, and auto-immune diseases, ME/CFS and fibromyalgia. The COVID-19 pandemic has significantly increased this population.

Watch this summary of experiences

They found that many face discrimination, often in the form of not being listened to or believed.

This is compounded by other forms of discrimination such as sexism, racism, transphobia, homophobia and fatphobia.

Disbelief and disregard in interactions with healthcare professionals has significant negative impact on all areas of people’s lives.

Disbelief and disregard: psychological harms

Disbelief and disregard project website

A letter to the world

This is a piece of prose I wrote in the early years of living with ME. I remember feeling immensely frustrated when people in my life told me I looked well and was really lucky to have fully recovered from ME!

The fluctuating and invisible nature of the illness just passed everyone by, leaving me feeling completely lost, alone and unseen…

Letter to those in a world untouched by ME

By Rachel Hazlewood

Your sleepless night; your tiredness; your headache or foggy brain.

All of your bodily aches and pains I understand. I am compassionate. You have my concern and support for all of these and so much more.

But more than this, you have my understanding – my empathy. For I know what these feel like. In your moment of ill health you are not suffering alone – for I am right there with you, walking by your side, feeling every step with you.

I do not have a monopoly on pain, on fatigue, on feeling ill from head to toe, or that inevitable accompanying feeling of frustration and incompetence. Yes, you are entitled to this and you will have my love and support and concern – without hesitation or question.

But know this: take that feeling and know that it will pass. It may take only minutes, it may take hours or even days. If you’re really unlucky you will feel ill for a few weeks, or even months. But it will pass. And when it does you will forget – oh how quickly you will forget what torment you lived through.

But know this… it will pass… how quickly you will forget

So, when you are at your lowest ebb; when you are in the deepest depths of your suffering, please find a small chink of humanity and compassion to capture that feeling and to hold onto it.

Think. Even just for the most fleeting of instants, what life is like for those of us patiently waiting – waiting for minutes, hours, days, weeks, months and years. So many minutes, so many days, weeks, months and years we can no longer keep count. Waiting for the ubiquitous symptoms to pass, hoping those symptoms will pass, yet knowing, in our hearts it is unlikely.

We go on. Of course we go on – we have no choice. Finding ways to keep going, adapting, adjusting – gleaning what pleasure we can.

Drifting through the world – invisible- living a ghostly half life – mere shadows of the people we once were. Our full, energy rich lives a distant memory.

I know you cannot give me energy, or bring a cure. You cannot stop the pain or blow the fog from my mind so my thoughts are clear again. And yet you can make a difference. You can take the time to look at me….. I mean really look at me and see beyond the body standing in front of you, going about her business: functioning. Look closer. Lean in.

you cannot give me energy, or bring a cure… and yet you can make a difference

See the tired eyes, the droopy shoulders and the shuffling feet. See the times I hold onto something to prevent myself from falling over, see the involuntary yawns and grimaces, the shaking muscles spasming uncontrollably….

See the slightly robotic gait or delay when I try to stand. See my lungs struggling to give me enough air to breathe freely. See how often I vigorously yet fruitlessly rub at my glasses trying to remove imaginary smudges, then realise it’s my poor tired eyes that prevent me from seeing the world in all its wonderful clarity.

Look……Look….. and see me – the exhausted, confused and frightened soul trapped in a failing and unpredictable body and mind. See what ME has stolen from me.

Look……Look….. and see me

If you can see all of this and can still bear to keep looking then you may also be wise enough to see deeper still. If you have compassion in your heart then you will see that there is still a glimmer – a small spark of life and hope.

But when you tell me I look well I feel silenced, shut down. My suffering invisible, unimportant, unacknowledged, insignificant. To acknowledge my suffering is to acknowledge me. My illness does not define me, but it is part of me, part of my every day.

To acknowledge my suffering is to acknowledge me

To tell me I look well you remove my voice. I can no longer express who I am. So next time you tell me I look well, I know you do not know me, you have not really looked – you have cast the most fleeting of glances in my direction and moved on in your world of wellness.

Every minute of every day is a challenge. But the essence of being determined is to keep fighting – determined to dig deep and somehow find the strength to get out of bed, to push through the extreme fatigue, the confusion and the pain to make the best of what each day has to offer: to hold down a job; to spend time with family and friends; to contribute to the world in whatever way I can – no matter how small and seemingly insignificant that contribution may appear. To me it is a triumph – a triumph of spirit. Each moment a mini victory.

If you see this, if you really see me, then I thank you. I thank you for pausing, for noticing, for caring and for helping to make the invisible visible.

I thank you for… helping to make the invisible visible

So next time you have a headache or feel tired, or are simply feeling unwell, celebrate its transience and think of all those trapped souls…… think of ME.