An introduction to myalgic encelphalomyelitis or chronic fatigue syndrome (ME/CFS): e-learning module

Following the English Delivery Plan Consultation in 2023 a commitment was made to produce Continuing Professional Development courses on ME/CFS.

Part 1 has been published and covers:

Chapter 1: What is ME/CFS?
Chapter 2: Causes of ME/CFS
Chapter 3: Symptoms of ME/CFS
Chapter 4: Managing ME/CFS
Chapter 5: Support and Information

The text can be viewed on the ME Association blog

2 more modules will be published later in 2024 and will be accessible to professionals through the ELF hub or Learning hub.

Patient experiences of remote consulting with CFS/ME & FM

English researchers set out to find out how the increasing use of remote consultations in general practice affected people with CFS/ME and Fibromyalgia.

Whilst face-to-face consulting was seen as a ‘gold standard’ by many, previous negative encounters affected the experiences of remote consulations.

“The participants felt they needed to ‘prove’ symptoms within a medical system that did not bestow legitimacy on these diagnoses, highlighting a clear power imbalance and likely further contributing to negative experiences in remote spaces.

More positive experiences came from those who felt care was connected, either with a consistent clinician or by feeling that their illness experience was understood.

This was particularly relevant for those with co-morbid conditions viewed as related to their CFS/ME and Fibromyalgia; a ‘one consultation, one problem’ approach was felt to insufficiently capture this complexity.

The more informal use of remote consulting, particularly telephone, to ‘check in’ was seen positively. Feeling heard, valued, and believed was at the crux of every encounter whether conducted remotely or face-to-face.”

Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study,by Helen Leach, Abi Eccles, Carolyn A Chew-Graham and Helen Atherton in BJGP Open 27 Aug 2024; BJGPO.2024.0079 [doi.org/10.3399/BJGPO.2024.0079]

Research abstract:

Background 

Remote and digital consulting in primary care has rapidly expanded since March 2020. It is important to understand patient experiences, particularly for those living with complex long-term conditions, to identify how care can best be delivered, including within the remote space.

Aim

To explore the experiences of people living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis [CFS/ME] and Fibromyalgia when consulting remotely in primary care.
Design & setting Semi-structured interviews with patients living with CFS/ME and fibromyalgia in general practice in England

Method

Semi-structured interviews were carried out with 13 participants. The interviews were transcribed and analysed thematically according to a Foucauldian theoretical framework.

Results

All participants highlighted needing to feel believed by clinicians. Many reported difficulties with telephone and online consulting due to the lack of physical communication. Positive outcomes were reported when there was a good relationship with a clinician. Continuity in care and recognising the complexity of these conditions were also considered important.

Conclusion

This study allowed people living with CFS/ME and Fibromyalgia to describe their experiences when consulting remotely. Participants highlighted needing to feel listened to and felt they benefited from an ongoing relationship with a clinician although this was difficult to achieve when consulting remotely.

Some advantages of remoted consulting were reported, particularly when symptoms were troublesome. Flexible access systems with a range of consultation modalities or preferred clinician(s) availability could improve healthcare encounters, particularly given the increased use of remote consulting, in primary care.

National campaign aims for step change in disability justice

We all want a decent quality of life for ourselves and those we care about. Yet two million Disabled people are trapped in deep poverty, unable to afford to eat or to heat their home.

Social security doesn’t cover the hidden or additional costs of disability – things like electricity to run vital equipment and appropriate transport to get out of your home. And too many workplaces are unwilling to employ Disabled people.

For people with ME/CFS there is an added lack of understanding about the fluctuating nature of the condition and the need to balance activity with rest to avoid PEM/PESE. Some even refuse to view ME/CFS as a long term physical condition which “has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities” – the definition of disability (Equality Act 2010)

That’s why WAMES is backing the UK-wide Campaign for Disability Justice, calling on Governments to work with organisations led by Disabled people to guarantee:

Opportunity

To support employers to create more accessible jobs and to ensure Disabled people have voluntary access to good quality employment support, without the threat of sanctions.

Security

To guarantee a decent standard of living for Disabled people, in or out of work, that adequately accounts for the additional costs they face. Improve social security so that everyone can live a decent life, whether they’re in work or not.

Respect

To lead the way in building a society that respects and values Disabled people and supports the development of local Disabled People’s Organisations (DPOs).

This is a significant initiative to call for change, supported by UK organisations such as Scope, Mencap, Disability Rights UK and the Trussell Trust, as well as many regional and local organisations.

Please, ACT NOW and sign up to support the campaign. Don’t forget to spread the word to your friends and families.

Follow the campaign on X at @CampaignFDJ and sign up at https://www.campaignfordisabilityjustice.org.uk/sign_up_to_support

WAMES 2024 Bank Holiday helpline hours

The WAMES helpline is run by volunteers and will be closed for the Bank Holiday long weekend.

helpline@wames.org.uk 

0290 2051 5061

closes 5pm 23rd August

reopens Tues 27th August

For emotional support, the Samaritans can be contacted 24 hours a day, 7 days a week.

English – 116 123 – free number (24 hours a day, 7 days a week)

Cymraeg – 0808 164 0123 – free number (7am -11pm, 7 days a week)

Children and young people up to age 25 can also contact Meic by phone, email, SMS text and instant messaging.

• 8am to midnight, 7 days a week
• FREEPHONE: 0808 80 23456
• SMS TEXT: 84001

Severe ME Artists Project

140+ people contributed to the project organised by #MEAction. This 17 minute long video is a compilation of photos, drawings, writing and videos submitted from aound the world.

#SevereME day

View the full gallery

#SevereMEday 2024

WAMES calls for safe hospital care for severe ME in Wales

On #SevereMEday,  8 August 2024, WAMES is asking the NHS in Wales to ensure they can treat patients with ME, and particularly those with severe ME, appropriately and safely.

To highlight what this means, WAMES is sending the NHS and hospitals a  copy of the WMEA Best practice guidelines, which can be used in conjuction with the NICE guidelines section 1.17: Care for people with severe or very severe ME/CFS

Best practice includes: 

1. LISTEN to ME: people with ME, carers and specialists
2. EDUCATE HEALTHCARE STAFF: about ME and discredited  treatments.
3. ALLOW ADVOCATES: to stay and speak for patients  to speak on their behalf.
4. SAFEGUARD REST: and eliminate all non-essential interaction around the patient.
5. ENSURE A LOW-STIMULUS ENVIRONMENT: Minimise sound, light, temperature, chemical or fragrance smells, sensory overload and physical contact.
6. SUPPORT NUTRITIONAL CARE: Allow special diet foods, flexible meal times and adjusted feeding positions. Initiate IV hydration, oral nutrition support, enteral tube feeding or parenteral nutrition where appropriate.
7. ENABLE MEDICATION MANAGEMENT: To avoid adverse reactions to drugs start medications one at a time and taper up slowly from a fraction of normal dose.
8. RESPECT REASONABLE ADJUSTMENTS: dark glasses, headphones or earplugs/ ear defenders, eye-masks, flat beds etc.
9. PRIORITISE COMMUNICATION:  If patients can tolerate conversation, speak slowly and quietly; provide additional time for them to process information.
10. BELIEVE ME: Severe ME has a much lower quality of life than cancer, stroke, MS and chronic renal failure. Patients should be treated with respect, their physiological disease recognised, and their symptoms addressed.

Download the full document:

Safer hospital care for Severe ME: information for health providers

See also: Hospital mistreatment of Severe ME patients globally #SevereMEday

Hospital Mistreatment of Severe ME Patients Globally

This #SevereMEday, 8th August 2024, the World ME Alliance is highlighting the experiences of people with Severe ME in hospitals across the globe. People with ME everywhere experience stigma, denial of evidence-based science, disdain and dismissal of symptoms by healthcare providers. Yet for those with Severe ME requiring hospital care, the consequences may be  fatal.

The grave dangers people with Severe ME are exposed to in hospital were underlined at the recent coroner’s inquest in the UK for Maeve Boothby O’Neill. Maeve, a 27 year old woman with Severe ME and resultant malnourishment, died in Oct 2021 following 3 hospital admissions where denial of emergency nutritional care led to her terminal decline.

Sadly, the mistreatment endured by Maeve Boothby O’Neill is far from rare. Carla Noaum, aged 23, diagnosed with ME over 8 years ago, has been battling to get appropriate care at West Middlesex Hospital in the UK since her admission in March 2024. Carla’s weight has dropped from 52kg to 35kg and she is suffering extreme digestive pain  from a nasogastric feeding tube, yet a psychiatrist stopped her pain medication and insisted on exposing her to light. The BBC reported her father as saying she was “screaming from pain” and repeatedly losing consciousness over nine days as a result.

France

This pattern of neglect and harm is being repeated around the world. Severe ME patient Alicia Pallenchier from France recalls:  “The last time I went to the hospital, I was deteriorating fast. They refused to admit me to the hospital where I live because they said I should just lose weight and see a psychiatrist. So I had to go 150 km away from home.

“At the beginning, I called them several times to take me to the bathroom, put on my pyjamas, or do things I could no longer do by myself. They opened the shutters and windows, even though I couldn’t stand the light. I was told that I shouldn’t do less in the hospital than I did at home. I told them that at home, I was dependent on my mother for almost everything.

“They offered me a shower every day because they didn’t understand that I wasn’t capable of having more than one shower a week. I had to ask for a nurse to bathe me but she didn’t understand as I am young.

“Almost no one came to help me. They never brought me the commode, even though I asked repeatedly. I had to get up several times a day to go pee, and I fell a few times. The meat was too hard to eat, but they didn’t offer to cut it. They even criticised me for my choice of breakfast because I can’t digest coffee or tea.

“They managed to lose my pill organiser on the first day. Missing the pill to stop menstruation was enough to trigger my period at the end of the week. They only offered me diapers. I left the hospital in an even more exhausted and compromised state than before.”

Greece

An anonymous patient in Greece reports: “Despite my Severe ME symptoms, hospital staff dismissed my condition as psychosomatic. They forced me through harmful tests and physical activities even when I couldn’t speak due to severe PEM.

“The staff mocked me and failed to provide appropriate care. I couldn’t eat their food because of severe MCAS so I was having to choose between constant reactions or not eating, and they exposed me to intense odours despite my extreme sensitivity. They refused to read relevant scientific literature on ME and their insistence that I was “overreacting” and that “it’s all in my head” contributed to an increase in abuse from my family.

“The Greek health system caused my condition to worsen, leaving me in a state of living death.”

Pakistan

Another anonymous patient summarised her experience of hospital in Pakistan: “No protection was offered against lights or sound. No pillows were given. Disability accommodations were forcefully taken away. I wasn’t allowed to use my collar (to support vertebrae compromised by EDS and CCI) or HR-monitoring watch. My IV fluids and pulse oximeter were removed. They told me to stop coming to the ER or I’ll be sent to the psych ward. They also made fun of me for trying to involve international ME doctors. I wouldn’t go to the ER again unless I was shot or in a car accident.”

Norway

Rachel Caroline from Norway states: “I am refused help. They say as long as I am not fatally sick, they won’t admit me to the hospital. It doesn’t matter if I am screaming in pain or unable to eat. Norway does not believe in energy-limiting conditions. Doctors say it’s just in my head, and I need to think myself healthy. I have no mental illness but still they just sent me home.

“I’m getting sicker every week. I scream with pain for 2 hours every day. I have stopped eating now. My poop is white. My urine is brown. There is often blood in my poop. And 40 other symptoms.”

“I’m not dying because of ME or Long Covid, I’m dying because the doctors are killing me by not investigating or helping me.”

Safe hospital care for Severe ME

Beyond medical neglect and gaslighting, hospital mistreatment that harms people with Severe ME to a life-threatening degree can amount to inhuman and degrading treatment.

The World ME Alliance hopes that the findings of Maeve Boothby O’Neill’s inquest will catalyse change for Severe ME patients globally.

Hospital care for Severe ME will always be challenging, but there are simple steps that can be taken to safeguard vulnerable patients and improve their experiences.

Learn about what safe hospital care should look like for people with Severe ME.

WAMES works with the World ME Alliance as they seek to:

• create global change by engaging the World Health Organisation’s support in designing and delivering services for ME
• enable ME organisations around the world to learn from, and support each other

Cancer drug cyclophosphamide shows ME/CFS is treatable

Dr Øystein Fluge & Dr Ingrid Rekeland

Norwegian scientists have been testing 2 cancer drugs on ME patients for 6 years, following a surprise recovery from ME when being treated for cancer. Patients with ME/CFS enrolled in the two clinical intervention trials RituxME and CycloME.

They have found that patients treated with cyclophosphamide reported greater and more lasting improvements than those treated with rituximab or placebo.

However these drugs are toxic and can cause severe side effects. They do not recommend cyclo as a treatment, but “these data should encourage efforts to better understand the disease mechanisms and to search for targeted and less toxic immune modulatory treatment for this patient group.”

They also acknowledge that “it is difficult to assess whether symptom improvement in a clinical trial can be attributed to the intervention or to other factors. During the trials, placebo mechanisms may contribute, and participants can also be affected by being taken care of in a clinical study (“trial effect”). A modest, but evident rate of recovery in the placebo group indicates a potential for spontaneous improvement, suggesting that ME/CFS is in principle a reversible disease.

Six-year follow-up of participants in two clinical trials of rituximab or cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Ingrid G. Rekeland, Kari Sørland, Lisbeth Lykke Neteland, Alexander Fosså, Kine Alme, Kristin Risa, Olav Dahl, Karl J. Tronstad, Olav Mella, Øystein Fluge in PLoS ONE 19(7): e0307484. 2024[doi.org/10.1371/journal.pone.0307484]

Research abstract

Objectives
In this six-year follow-up study, we used patient-reported outcome measures (PROMs) to compare values at baseline, at 18 months, and at six-year follow up from the CycloME and the RituxME trials.

Methods
Based on the hypothesis that ME/CFS in a subgroup of patients is a variant of an autoimmune disease, we performed two clinical trials between 2014 and 2017. The RituxME trial was a randomized, double-blind and placebo-controlled phase III trial of 151 patients, assessing the B-cell depleting antibody rituximab.

The CycloME trial was an open-label phase II trial of 40 patients using intravenous cyclophosphamide. Here we report six-year follow-up from both trials, using the Short Form 36 Physical Function (SF-36 PF) and DePaul short form (DSQ-SF) questionnaires.

Result
Of the patients available after six years, 75.7% of RituxME and 94.4% of CycloME patients participated. In the RituxME rituximab group, the mean SF-36 PF scores were 32.9 at baseline, 42.4 at 18 months and 45.5 at six years. In the placebo group, the mean SF-36 PF scores were 32.3 at baseline, 45.5 at 18 months and 43.1 at six years. In the CycloME trial, mean SF-36 PF increased from 35.4 at baseline to 54.4 at 18 months, and 56.7 at six years.

At six-year follow-up, 44.1% of cyclophosphamide-, 27.6% of rituximab- and 20.4% of placebo-treated patients had an SF-36 PF ≥ 70, and further, 17.6%, 8.6% and 7.4% of the corresponding patient groups had an SF-36 PF ≥ 90, which is within normal range. In terms of worsening at six years, 5.9% of cyclophosphamide-treated, 10.3% of rituximab-, and 14.8% of placebo-treated patients had a drop in SF-36 PF of 20 points or more from baseline. There were no serious unexpected adverse reactions.

Conclusions
After six years, 44.1% of the cyclophosphamide group scored an SF-36 PF of at least 70, and 17.6% of at least 90, suggesting that cyclophosphamide in a subgroup may modulate the disease course in a beneficial way. However, cyclophosphamide carries toxicity concerns and should not be used for ME/CFS patients outside clinical trials. Rather, these data should encourage efforts to better understand the disease mechanisms and to search for targeted and less toxic immune modulatory treatment for this patient group.

ME/CFS is hetergeneous 

This study found that although there is a wide variation in experience among the ME/CFS patient population, it does not differ significantly across different clinics. According to the authors “this suggests that expert clinicans are recognizing the same clinical entity, albeit one that is far from homogeneous.”

SUMMARY

• This study aimed to assess whether different clinical practices across seven U.S. specialty clinics lead to variations in the identification of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) characteristics.
• Researchers utilized standardized questionnaires and data collection methods to compare patient characteristics and clinical features across these clinics.
• The results showed that despite slight statistical differences in demographic and clinical characteristics across sites, there were no clinically significant differences in the presentation of ME/CFS symptoms and functions among the clinics.
• This suggests that different clinical practices do not lead to significant variations in how ME/CFS is identified and managed among specialists.
• The study confirmed a wide range of symptom severity and functional impairment among ME/CFS patients, highlighting the inherent heterogeneity of the disease. All clinics reported a broad distribution in symptom scores and health measures.
• The study also examined the use of different case definitions for ME/CFS and found varying proportions of patients meeting each criterion across clinics, indicating that the choice of case definition can influence disease recognition and research outcomes.

DEFINITIONS

Case Definition: A set of standard criteria for determining whether a person has a particular disease or condition, used in research and clinical diagnostics to ensure consistency across studies and treatments.

Functional Impairment: A decrease in a patient’s ability to perform daily activities due to the effects of a medical condition.

Heterogeneity: In medical research, this refers to the variation in disease presentation and progression among different individuals with the same diagnosis.

RESEARCH ABSTRACT

Background: 

One of the goals of the Multi-site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study was to evaluate whether clinicians experienced in diagnosing and caring for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) recognized the same clinical entity.

Methods: 

We enrolled participants from seven specialty clinics in the United States. We used baseline data (n = 465) on standardized questions measuring general clinical characteristics, functional impairment, post-exertional malaise, fatigue, sleep, neurocognitive/autonomic symptoms, pain, and other symptoms to evaluate whether patient characteristics differed by clinic.

Results: 

We found few statistically significant and no clinically significant differences between clinics in their patients’ standardized measures of ME/CFS symptoms and function. Strikingly, patients in each clinic sample and overall showed a wide distribution in all scores and measures.

Conclusions:

Illness heterogeneity may be an inherent feature of ME/CFS. Presenting research data in scatter plots or histograms will help clarify the challenge. Relying on case–control study designs without subgrouping or stratification of ME/CFS illness characteristics may limit the reproducibility of research findings and could obscure underlying mechanisms.

Read full study:

Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics, by by Elizabeth R Unger et al in
J. Clin. Med. 2024, 13, 1369. [doi.org/10.3390/jcm13051369]

Read ME Research UK’s overview:

Disease heterogeneity among people with ME/CFS

Although a lack of variation between clinics was identified, the participants within each clinic – and in the overall sample – showed a wide distribution in scores and measures, indicating overall disease heterogeneity.

ME/CFS & Long COVID patients have similar symptoms & quality of life

This Australian study compared 61 patients with ME/CFS with 31 patients with Long Covid (aka Post COVID-19 condition- PCC) and found few differences in symptoms between the two groups.

They say: “this publication documents the profound and widespread illness burden experienced by pwME/CFS and pwPCC in Australia, thereby necessitating health policy reforms that facilitate improved accessibility of necessary care and support services for Australians living with these illnesses.

The present study observed marginal differences in illness presentation between pwPCC and pwME/CFS, with notable similarities between the two cohorts in key symptoms typically experienced by pwME/CFS, such as post-exertional malaise, neurocognitive dysfunction and sleep disturbances.”

Other past studies also found all pwPCC experienced post-exertional malaise though 2 had found a lower prevalence of post-exertional malaise 82.8% and 78% “Post-exertional malaise is a noteworthy component of the PCC illness presentation and should be considered in diagnostic criteria and care provision.”

“Among the cardinal ME/CFS symptoms, only memory loss was significantly more prevalent and unrefreshed sleep significantly more frequent among pwME/CFS than pwPCC in the present study.”

The few remaining significant differences in symptom presentation between the cohorts included a higher prevalence of muscle weakness, lymphadenopathy and nausea, greater severity of light-headedness, and reduced frequency of heart palpitations among pwME/CFS. However, the existing literature is incongruous regarding the presentation of such symptoms among pwME/CFS and pwPCC .

Additionally, comparisons of illness presentation have largely focused on symptom prevalence and few investigations have compared symptom frequency and severity among these two illness cohorts.”

Hence, fulfilment of ME/CFS criteria following acute COVID-19 illness may be an indicator of illness trajectory and a means of identifying pwPCC at risk of long-term illness.

“The findings of the present study underscore the risk of developing permanent chronic illness and disability following acute COVID-19 illness and foreground the potential role of ME/CFS in the illness progression and diagnosis of PCC.

This also has important ramifications for estimating the future healthcare burdens of post-COVID-19 sequelae (as over 90% of people with ME/CFS experience life-long illness and emphasises the importance of reducing SARS-CoV-2 transmission.”

“Findings exemplify the physically disabling nature of ME/CFS and PCC, which must be considered in the provision of care for people with these illnesses… Importantly, the impacts on daily activities observed in this study emphasise the need for integrated approaches across the healthcare, disability and social support sectors for pwME/CFS and pwPCC in Australia.”

Read the full paper:

Illness presentation and quality of life in myalgic encephalomyelitis/chronic fatigue syndrome and post COVID-19 condition: a pilot Australian cross-sectional study , by Breanna Weigel, Natalie Eaton-Fitch, Kiran Thapaliya, Sonya Marshall-Gradisnik in Qual Life Res. 2024 Jul 3 [doi: 10.1007/s11136-024-03710-3]