Carers Week 2023 campaign: Cross-Government action to identify and support carers
New Carers Week research reveals 19 million people in the UK have provided unpaid care, but haven’t identified as a carer.
Without proper identification, carers miss out on vital support – impacting both their finances and their health. The research shows that providing unpaid care has had a negative impact on the health and wellbeing of 8 million people in the UK.
The government needs to act now to protect carers’ wellbeing and prevent them from being pushed into poverty. Cross-government action is needed to identify and support carers.
Carers Wales says: “This Carers Week, we want communities across the UK to come together to recognise the huge contribution unpaid carers make to society.”
Getting it Right: Addressing myths about the 2021 NICE guideline for ME/CFS
Brian Hughes is an academic psychologist and university professor in Galway, Ireland with a blog called the Science bit. On World ME Day 2023 he spoke to the Hope 4 ME & Fibro NI conference in Belfast.
He outlined eight pieces of misinformation regarding the new guideline (and about ME/CFS more generally) that are currently being pushed from certain quarters.
These myths included:
“CBT and GET are ‘evidence-based’ treatments for ME/CFS!”
“Evidence cannot just ‘change’!”
“The NICE review was driven by patient advocacy!”
“The defenders of the old guideline are simply standing up for science!”
“You cannot evaluate ME/CFS outcomes using objective measures!”
The WAMES news blog could be the platform you need.
About what?
Maybe you have questions, rants, discussion points, experiences, creative expressions you wish to share, about:
ME
living with chronic or invisible illness
disability and access issues
caring or being cared for
health and social care
education
mobility and transport
low energy activities
or…?
Who?
We invite anyone affected by ME in Wales to share with the community, whether you live with ME, care for someone, are a friend, family or colleague, provide services or…?
Format?
Painted rocks
If you don’t want to write an article, maybe poetry, art, photographs or video might express your thoughts better.
They could be in English only or be bilingual. Our social media advertises our blog content across Wales and beyond so can reach a varied readership.
We are currently fundraising for a newly designed website so let us know what functions and layout we will need to host your masterpiece!
How?
Send your contributions to jan@wames.org.uk or contact her to discuss possible contributions.
Please be aware that we won’t accept contributions that are offensive, name names unnecessarily, or oppose the underlying principles of WAMES.
Australian researchers found 101 key studies in ME/CFS that varied in efficacy, quality, and potential to be developed into a diagnostic biomarker. Most were blood-based and measured a range of dysfunction.
“Many of these biomarkers were studied in isolation but may be part of a complex multidisciplinary process as displayed by some of the overlap between observations made and extensive crosstalk between each system. There is evidence of widespread genetic, immune, neurological, mitochondrial and endocrine differences in ME/CFS compared with healthy controls.”
Immune dysfunction appeared to be key and the use of lymphocytes a potential model, which are a type of white blood cell in the immune system and include natural killer cells, T cells, and B cells. To aid future biomarker research the researchers concluded there is a need for multidisciplinary research and uniform protocols.
Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multifaceted condition that affects most body systems. There is currently no known diagnostic biomarker; instead, diagnosis is dependent on application of symptom-based case criteria following exclusion of any other potential medical conditions. While there are some studies that report potential biomarkers for ME/CFS, their efficacy has not been validated.
The aim of this systematic review is to collate and appraise literature pertaining to a potential biomarker(s) which may effectively differentiate ME/CFS patients from healthy controls.
Methods
This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and Cochrane review guidelines. PubMed, Embase and Scopus were systematically searched for articles containing “biomarker” and “ME/CFS” keywords in the abstract or title and if they included the following criteria:
(1) were observational studies published between December 1994 and April 2022;
(2) involved adult human participants;
(3) full text is available in English
(4) original research;
(5) diagnosis of ME/CFS patients made according to the Fukuda criteria (1994), Canadian Consensus Criteria (2003), International Consensus Criteria (2011) or Institute of Medicine Criteria (2015);
(6) study investigated potential biomarkers of ME/CFS compared to healthy controls. Quality and Bias were assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Case Control Studies.
Results
A total of 101 publications were included in this systematic review. Potential biomarkers ranged from:
genetic/epigenetic (19.8%)
immunological (29.7%)
metabolomics/mitochondrial/microbiome (14.85%)
endovascular/circulatory (17.82%)
neurological (7.92%)
ion channel (8.91%) and
physical dysfunction biomarkers (8.91%).
Most of the potential biomarkers reported were blood-based (79.2%).
Use of lymphocytes as a model to investigate ME/CFS pathology was prominent among immune-based biomarkers. Most biomarkers had secondary (43.56%) or tertiary (54.47%) selectivity, which is the ability for the biomarker to identify a disease-causing agent, and a moderate (59.40%) to complex (39.60%) ease-of-detection, including the requirement of specialised equipment.
Conclusions
All potential ME/CFS biomarkers differed in efficiency, quality, and translatability as a diagnostic marker. Reproducibility of findings between the included publications were limited, however, several studies validated the involvement of immune dysfunction in the pathology of ME/CFS and the use of lymphocytes as a model to investigate the pathomechanism of illness.
The heterogeneity shown across many of the included studies highlights the need for multidisciplinary research and uniform protocols in ME/CFS biomarker research.
This review aims to illustrate exercise pathophysiologic commonalities between PASC and ME/CFS that will help guide future diagnostics and treatment.
Research abstract:
Topic importance:
Post-Acute Sequelae of SARS-CoV-2 (PASC) is a long-term consequence of acute infection from coronavirus disease 2019 (COVID-19). Clinical overlap between PASC and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been observed, with shared symptoms including intractable fatigue, post-exertional malaise, and orthostatic intolerance. The mechanistic underpinnings of such symptoms are poorly understood.
Review findings:
Early studies suggest deconditioning as the primary explanation for exertional intolerance in PASC. Cardiopulmonary exercise testing (CPET) reveals perturbations related to systemic blood flow and ventilatory control associated with acute exercise intolerance in PASC, which are not typical of simple detraining.
Hemodynamic and gas exchange derangements in PASC have substantial overlap with those observed with ME/CFS, suggestive of shared mechanisms.
PF gives her experience of an ME/CFS friendly way of attending a Pain Clinic in south Wales.
As my referral to the Pain Clinic was made during Covid lockdown I was initially offered a Consultation over the phone, instead of having to physically go to the hospital.
I had a lengthy constructive consultation with a pain management consultant who asked a lot of questions and actively listened to what I said. (This has not always happened to me in the past!) As I have other health issues, including ME/CFS, he suggested the best way forward would be to have a support person to help guide me through their Pain Management program.
With an entirely open mind, I agreed to participate fully, in the hope I’d receive an element of helpfulness, as the last 14 years have been a struggle with the numerous chaotic difficulties that come with ME/CFS.
I was desperate for anything to help me help myself and manage my pain, so I gladly accepted a combination of telephone calls with downloadable mini segments of modules relating to pain management.
I struggle with cognitive and physical difficulties, so I asked to have bi-weekly sessions at a slower pace, with smaller amounts of information. Thankfully they agreed. This helped me massively as I was able to spend as time as much as I needed to repeat the sessions. A link would arrive by email and when I opened it a calm voice would speak, backed up by text and diagrams, and ending with questions.
I could take time to absorb what was being communicated and work out how it related to me. To reassure me and help my developing understanding I had an hour’s one-to-one telephone session with my support person, who was the same person throughout. This relationship was very helpful.
Even when I felt I knew about a topic, I still spent time on it. You can choose not to do this, but personally I don’t believe in complaining about something not being applicable or helpful to me, if I was not willing to put in the effort. I believed I would only get out what I was willing to put in.
Pain clinic is not a magic bullet of medication(s) or a pain patch or injections
⇒The first segment started by informing me of different types of pain. Another followed up the impact pain has on my body. Next I learned about the types of medications and what their contribution is towards pain management.
The first big personal discovery was that there was a slow release version of the drug I took – Tramadol – which might be better for me. The Pain Clinic wrote to my GP, who agreed to prescribe it and although it doesn’t take away pain, it assists me in having more control of my pain, balancing it and avoiding spikes and dips. It equates to a better quality of life for me.
Depending on the outcome of my bi-weekly telephone conversation my support person gave me several links to access. I found I was able to listen multiple times, as at first due to my cognitive difficulties it felt as though I was listening to gobble di gook. After 48 hours of active listening, I was able to start processing the information and come to some understanding of what was being said.
By the beginning of the following week I was able to then think more clearly as to how this information may apply to me.
By the time a new support session was due I was able to voice what I had learned and clarify that I had understood correctly, then discuss how it might be applicable to my life. Gradually I realised I was developing a better understanding of what’s happening within my body and how I may be able to find a better way to manage my pain.
⇒ Another major message of the course was that although pain might never go away, we can change our focus and not waste energy trying to remove it. By understanding how our body filters pain, how the internal stimuli system (my body’s auto-senses) processes pain and the impact external stimuli elements also have on my pain I can see how I can perceive it differently and find ways to soften the impact of it. Pain has many facets and both the psychology and physiology of pain can influence and impact how we experience pain.
⇒ Having a clear plan was also encouraged, accepting that you might have to change the way you do things, to be achieved in smaller doable steps was another lesson. If we step back and ask whether the tasks we couldn’t achieve before might in fact be achievable by modifying our actions and expectations. By using light tools I can still garden and see seedlings spring into life rather than focus on negativity & pain.
⇒ Finding ways of self soothing and calming were encouraged. To stop and take a breath. For me this has meant online art classes which both help with pain management and give me a social experience.
⇒ Asking for help from others can often lead to self criticism. It is too easy to feel guilty or sad, but when we can, and explain to them exactly how they could help, we can find ourselves more able to do something. I was challenged to be kind to myself but also to ask for help in a way that doesn’t require a big confession or lesson in what ME/CFS is. People might not understand the complexities of our health condition, but can still respond to our request.
⇒ To develop an inner voice of calmness we were encouraged to e.g. focus on the positives each day and accept things might not happen as we wished. Calmly developing a plan B helps, if plan A cannot happen. If remaining calm means resting then I can give myself the gift of resting without personal recriminations, putting things into perspective and making plans for another time in maybe smaller steps, with adaptable changes if need be, and being kind to myself.
We were given breathing exercises and other methods of relaxation to aid rest or sleep, though we don’t necessarily need to sleep. Just closing our eyes, resting in peace in a darkened quiet place often helps me. It allows me to decompress from my body/brain being overloaded and from being excluded from my community due to my illness, as the charcoal sketch of my unworn shoes illustrate.
To sum up…
All the many downloadable sessions – I’ve just mentioned a few – were individually helpful but eventually they all linked up to complete a bigger picture, like a jigsaw puzzle. They gave me a set of tools to develop my understanding of many aspects of life as I journey through time.
This may sound quite complex and even condescending, as though I haven’t lived life or know how to deal with any of the stuff that I have to navigate through. It is not. Yes I may have had knowledge of some things but pain clinic gradually, on a weekly basis, gave me a better understanding of many more things and I can still access that information today, if I wish.
There were no physical activities as this was understood not to be helpful for ME/CFS. The flexible way the information was delivered and the fact they allowed me to take it at my own pace, made the process so much more helpful than I would have thought was possible.
[Due to irritating cognitive problems I have relied on Jan’s help to edit my experiences!] PF
For World ME Day, 12th May 2023 “M.E. – the disease where pushing harder can make you sicker”
Shattered…
Battered…
Shell-shocked…
Dazzled…
Detonated from sleep…
By explosion in my brain.
Perspiration…
Prostration…
Nausea…
Pain…
I lie quietly, tightly,
Barely daring to breathe…
Yesterday, did too much…??
And triggered PEM…
Again…
I long to return to the life that I had…
Excitement and routine…
Highs and lows…
Good and bad…
But I must lie silent,
Isolated in time…
Life-denied…
Soul-destroyed…
Inexpressibly sad…
Notes
“Post-exertional malaise (PEM) is the worsening of symptoms in ME, following even minor physical or mental exertion. Symptoms typically worsen 12 to 48 hours after activity and last for days or even weeks.”
“Malaise”, lit. “ill-at-ease”, does not begin to describe it…. “collapse” a much better descriptor.
highlights Post-Exertional Malaise (PEM) or Post Exertional Symptom Exacerbation (PESE) as a cardinal symptom
recommends the NICE and IOM guides to diagnosis and
gives 12 top tips.
PEM/PESE is the exacerbation of illness that results when a patient’s energy limit is exceeded.
Top tips
First do no harm
Learn about ME/CFS
Teach patients to pace
Provide symptomatic treatment
Arrange nutritional support
Minimise the impact of care
Protect from Safeguarding misadventures
Support applications for financial support and social care
Support accommodations at work and in education
Provide high quality medical care
Be accessible
Review patients regularly
1. First do no harm
Given that PEM is the hallmark symptom of ME/CFS, exercise can be very harmful. The National Institute for Health and Care Excellence, NICE’s comprehensive review of all studies of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) found them to be universally of low to very low quality. NICE states, “Do not offer people with ME/ CFS:
Any therapy based on physical activity or exercise as a cure for ME/CFS.
Generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses.
Any programme that uses fixed incremental increases in physical activity or exercise, for example Graded Exercise Therapy.
Physical activity programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.
The Lightning Process, or therapies based on it.”
(NICE, pg. 33, 41)
CBT can at best provide psychological support and at worst contribute to harm by consuming precious energy or misinforming patients. It is not a cure and NICE states that practitioners must not assume people have abnormal illness beliefs and behaviours as an underlying cause of their ME/CFS.
2. Learn about ME/CFS
Learn about the many symptoms of ME/CFS, how you may help with them, and the common comorbidities that can be present, which should be treated in their own right.
NICE guideline 2021 | US Consensus Recommendations | Bateman Horne Center | Dialogues project | Dysautonomia International | POTS UK
3. Teach patients to pace
There is no cure for ME/CFS. The most important aspect of management is to learn to manage activities to stay within the individual’s energy limit and avoid triggering Post Exertional Malaise. Advise patients to rest and pace as soon as the diagnosis is suspected. An occupational therapist who understands ME/CFS can be invaluable in teaching pacing techniques and providing aids and adaptations that help conserve energy.
4. Provide symptomatic treatment
Compassionate care can make a huge difference to the patient experience. Attend to issues such as sleep disturbance, orthostatic intolerance and pain in order to improve function and quality of life. Be creative and committed, but be cautious. When prescribing medications, start low and go slow as ME/CFS patients are more susceptible to side effects. Beware of inflexible sleep hygiene interventions as they are not appropriate in ME/CFS and have been known to cause significant harm.
5. Arrange nutritional support
Severely ill ME/CFS patients can struggle to maintain their nutrition due to muscle weak-ness / paralysis, difficulty swallowing, nausea / abdominal pain, dysautonomia of the GI tract, food intolerances and Mast Cell Activation Syndrome. Screen for undiagnosed gastrointestinal disorders, such as Coeliac disease. Nutritional failure can cause death in ME/CFS and some patients need enteral or intravenous tube feeding. Refer early for nutritional assessment and support.
6. Minimise the impact of care
Care must be taken to respect patients’ sensory limitations and allergies as this can also trigger PEM. Those very severely affected and bed bound can be extremely sensitive even to the lightest touch, lowest light and softest whispers, so care must be given with the greatest of caution. Environmental factors such as noise, light and smells are also important considerations when ME/CFS patients require hospital admission or need to attend other healthcare settings, such as radiology departments.
7. Protect from Safeguarding misadventures
Poor clinical understanding of ME/CFS has meant that patients have been accused of malingering or admitted to psychiatric hospitals, and the families of children with ME/CFS have frequently been suspected of fabricating or enabling their child’s illness. Where abuse or neglect is suspected, a knowledgeable ME/CFS specialist must be consulted. NICE helpfully lists features commonly seen in ME/CFS which do not necessarily mean a patient is being abused or neglected:
Physical symptoms that do not fit a commonly recognised illness pattern.
More than one child or family member having ME/CFS.
Disagreeing with, declining or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf.
Parents or carers acting as advocates and communicating on their behalf.
Reduced or non-attendance at school.
Tymes Trust paper | Action for ME survey | Voices film | British Association of Social Workers (BASW) guidance on FII
8. Support applications for financial support and social care
Only a minority of ME/CFS patients are able to work and most of these can only manage reduced hours. Social and other activities are sacrificed to sustain the energy required for work. Access to any support to which patients are entitled is therefore crucial.
9. Support accommodations at work and in education
Reasonable adjustments should be provided to enable ME/CFS patients to remain in employment or education. Accommodations can include modifications to the work envi-ronment, reclining work stations, rest facilities, shorter working hours, working from home and transport or parking arrangements. In the UK patients may be entitled to assistance via the Access to Work scheme.
For children and young people, consider education at home where needed using online resources and communication tools, home tutoring and flexible or hybrid arrangements, to provide equal access to education as much as is possible. ME/CFS is the single greatest cause of long-term sickness absence in UK schools, therefore solutions must be found to minimise the impact of this disease on the educational attainment of affected children and young people.
10. Provide high quality medical care
ME/CFS services should include medically trained Physicians, GPs / family doctors or Paediatricians, who can provide comprehensive assessment, appropriate investigations and make diagnoses (NICE, Box 3, pg. 16). Services should have access to allied health care professionals such as nurses, occupational therapists and dietitians, who can assess, treat and perform procedures in patients’ homes where necessary. A named contact should be provided so that patients know how to get help when needed.
11. Be accessible
Services should be accessible. 25% of ME/CFS patients are house bound or bed bound, and those who can get to a doctor’s surgery often suffer Post Exertional Malaise as a result. Therefore these patients require telephone or video consultations and home visits. For this reason services should ideally be community based.
12. Review patients regularly
It is easy to forget patients who are bed bound and too weak to seek medical care. ME/CFS patients should be regularly reviewed – annually for adults, six-monthly for children (NICE 2021). Evaluate and investigate new symptoms and changes in symptoms to determine if they are due to ME/CFS or to another condition. Do not forget routine primary prevention (e.g. well woman checks, smear tests) and vaccinations.
The US ME/CFS Clinician Coalition have produced a Consensus Statement about Long COVID.
Since 2020, we’ve been seeing people with Long COVID whose symptoms overlap with ME/CFS. We recommend you consider ME/CFS in the differential diagnosis of Long COVID, particularly when post-exertional malaise (PEM) is present.
It is our clinical impression that early diagnosis and management of PEM and ME/CFS in these patients may be important in their disease trajectory. For more information, read the ME/CFS Clinician Coalition Letter.
Excerpt:
By proposing that ME/CFS be diagnosed by 6 months of illness in relation to symptom onset since acute COVID-19 infection, we aim to do the following:
Improve historically low diagnostic rates and prevalence estimates of ME/CFS
Initiate earlier therapy in those with ME/CFS following COVID
More accurately assess the initial ME/CFS state (<3 years), thereby improving opportunities for early intervention and recovery prospects
Early recognition of ME/CFS and its common comorbidities can expedite the use of helpful therapies in Long COVID (14,15). For example, patients with ME/CFS following COVID report improvement when pacing – a form of activity management based on symptom-contingent energy allocation to reduce flares – is implemented.
Even if full ME/CFS criteria are not met, we still recommend that any Long COVID patient with classic signs of post-exertional malaise (post exertional symptom exacerbation) engage in paced activity to reduce exercise-induced progression.
About the ME/CFS Clinician coalition
The Coalition is committed to improving clinical care for patients with ME/CFS by advancing best clinical practices, providing education for the medical community, expanding the pool of medical providers with strong expertise in ME/CFS, and providing clinical insights for researchers. Find out more
Maybe you have questions, rants, discussion points, experiences, creative expressions you wish to share, about:
I had a lengthy constructive consultation with a pain management consultant who asked a lot of questions and actively listened to what I said. (This has not always happened to me in the past!) As I have other health issues, including ME/CFS, he suggested the best way forward would be to have a support person to help guide me through their Pain Management program.
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resting without personal recriminations, putting things into perspective and making plans for another time in maybe smaller steps, with adaptable changes if need be, and being kind to myself.
outlines what ME/CFS is and is not
