NHS 111 Wales web page on ME/CFS has been updated

Posted on 04/28/2023 by wames

ME/CFS on the NHS 111 Wales website

 

Following a request from WAMES the Welsh Ambulance Services NHS Trust has updated the information page on ME/CFS on the NHS 111 Wales website ME/CFS, to take account of the 2021 NICE guideline. WAMES is grateful for their willingness to do this.

Symptoms

The page now acknowledges the 4 symptoms needed to diagnose the condition as:

  • Fatigue
  • Post-exertional malaise
  • Problems sleeping
  • Cognitive difficulties

Diagnosis

Information about diagnosis is taken from NICE:

all 4 of the main symptoms should be present for a minimum of 6 weeks in adults and 4 weeks in children and 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.

Management

The help that people can expect with management comes from the NICE guideline and includes referral to a ME/CFS specialist team, where available, who will:

  • Carry out and record an assessment… to confirm the person’s diagnosis and also to help in future management.
  • Develop and agree a personalised care and support plan.
  • If your symptoms are severe, your doctor should ask a specialist for advice.
  • Your management plan should be reviewed regularly.

The page advises against resting completely and taking up vigorous unsupervised exercise but it does say “an exercise plan may be suitable for some people living with CFS /ME, but exercise programmes such as graded exercise therapy (GET) are no longer recommended for everyone with ME/CFS”.

CBT is mentioned as an option which “may help you manage your symptoms but is not a cure… by changing the way you think and behave”. The free online mental health service, Silver Cloud, based on CBT, is recommended.

The biggest disappointment is that the definition of PEM in NICE was not included. Instead the description simply says:

“This is where exercise makes the symptoms worse. Sometimes the effect is delayed and you’ll feel exhausted a few hours after you’ve exercised, or even the next day.”

Unfortunately the NICE guideline doesn’t appear to be accepted in its entirety by the Clinical Advisors Group who have to authorise the text.

What do you think?

  • Does the page give an accurate introduction to ME/CFS?
  • Is it ‘Healthcare you can trust – 24/7″ as their logo says?
  • Does the Welsh translation communicate the same information?

NHS 111 invite your comments at the bottom of the web page. They assure us they read them all.

“We value your feedback. Click here to complete our online survey”

NHS 111 Wales: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

The page is long but if you feel well enough, why not read it (pace yourself!) and give them your comments. If lots of readers highlight the same problems, they will hopefully reconsider…

#ImplementNICEmecfs

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Movement for Good nomination

Posted on 04/27/2023 by wames

Please help WAMES win £1,000!

 

WAMES has been nominated for a £1,000 donation from charitable donor the Benefact Group through the Movement for Good programme. We have been entered into a draw which will take place 3 times during 2023: June, September and December.

You can help!

The more nominations a charity gets, the greater their chances of winning so we invite you to also nominate WAMES. It will just take a couple of minutes.

Nominate us today

WAMES charity no: 1144534

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Research: Post-exercise fatigue and function in men & women with ME/CFS

Posted on 04/26/2023 by wames

This US pilot study was surprised to find that a six-minute walk test didn’t produce as many post-exercise abnormalities in people with ME/CFS and no major differences between men and women.

Healthy people’s hearts returned to a slow rate in the 7 days after the walk tests, whereas the ME/CFS group showed no significant change.

It is uncertain how much physical exercise over how many days is required to sustain PEM. The researchers suggest that a 12-min walk test with instructions to “walk as fast as you can” would be produce more results and would enable many disabled ME/CFS patients, who lack mobility to participate in research from home.

 

Sex differences in post-exercise fatigue and function in myalgic encephalomyelitis/chronic fatigue syndrome, by Fred Friedberg, Jenna L Adamowicz, Patricia Bruckenthal, Maria Milazzo, Sameera Ramjan, Xiaoyue Zhang & Jie Yang in Scientific Reports vol 13, no: 5442, 3 Apr 2023

Research abstract:

To assess biobehavioral sex differences in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) utilizing a low burden exercise protocol, 22 females and 15 males with ME/CFS and 14 healthy controls underwent two six-min walk tests.

Fifteen daily assessments were scheduled for fatigue and function ratings and heart monitoring. Six-min walk tests were conducted on days 8 and 9. The ME/CFS group showed high self-report fatigue and impaired physical function, whereas healthy controls did not show fatigue or function abnormalities.

In patients, no significant post-exercise changes were found for heart rate variability (HRV); however, heart rate decreased in ME/CFS males from Day 14 to Day 15 (p = 0.046). Female patients showed increased fatigue (p = 0.006) after the initial walk test, but a downward slope (p = 0.008) in fatigue following the second walk test. Male patients showed a decrease in self-report work limitation in the days after exercise (p = 0.046). The healthy control group evidenced a decrease in HRV after the walk tests from Day 9–14 (p = 0.038).

This pilot study did not confirm hypotheses that females as compared to males would show slower exercise recovery on autonomic or self-report (e.g. fatigue) measures. A more exertion-sensitive test may be required to document prolonged post-exertional abnormalities in ME/CFS.

 

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New fact sheet on ME from the WMEA

Posted on 04/26/2023 by wames

Myalgic Encephalomyelitis factsheet

 

WAMES has been working with ME organisations around the world to produce a new fact sheet on Myalgic Encephalomyelitis (ME), with a particular focus on post-exertional malaise (PEM). Available in a growing number of languages, we hope this resource will help build a basic understanding of ME across borders.

Myalgic encephalomyelitis (ME), also sometimes known as chronic fatigue syndrome (CFS), is a disabling, chronic and complex disease.

People with ME are not able to function the same way they did before they became ill. ME changes people’s ability to do daily tasks, like taking a shower or preparing a meal. It often makes it hard to keep a job, go to school, and take part in family and social life. At least 1 in 4 people with ME are bed- or house-bound for long periods during their illness.

ME can get worse after any activity, and pushing harder can make someone with ME sicker. This hallmark symptom is known as post-exertional malaise (PEM).

The COVID-19 pandemic has brought this issue to the forefront, with a growing number of people with long COVID experiencing PEM. This has further highlighted the already urgent need for increased awareness and understanding of ME and its associated symptoms.

That’s why the World ME Alliance excited to launch the new info sheet, which provides valuable information on ME, PEM, and the impact of COVID-19. Available in English, Spanish, and Italian, as well as an easy-read format in English, our factsheet is a valuable resource for anyone looking to learn more about ME and its associated symptoms.

Download the ME Factsheet
English           Welsh

English easy-formatting (useful for text-speech software)

Español          Français         Italiano       Portugese      Hebrew

The simple information provided should be known by every healthcare professional, and we hope will give the general public a better understanding of the huge impact of ME.

We are launching this in the run-up to World ME Day on May 12th. This is an important day in the calendar for raising awareness of ME and the issues facing those with the disease. We encourage everyone to visit worldmeday.org to learn more about events and activities taking place on this important day.

Whether you are only hearing about ME for the first time, are a healthcare professional or maybe a family member of someone with ME, we hope that our new factsheet will give you a better understanding of this disease and its associated symptoms. Please share it widely with friends, family, and colleagues to help us raise awareness and understanding of this important issue.

#WorldMEDay      #LearnFromME

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Treatment research: intranasal mechanical stimulation (INMEST)

Posted on 04/25/2023 by wames

Achieving symptom relief in ME/CFS with INMEST

 

A small Swedish study used intranasal mechanical stimulation (INMEST) to target symptoms in people with ME of autonomic dysregulation e.g. dizziness, fainting when standing up, digestive problems, sweating, vision problems. Participants received 20 minutes of INMEST twice a week for 1 month, or placebo treatment.

“The INMEST device consists of a thin plastic probe placed in the nose that vibrates at a set frequency to mimic turbulent airflow within the nasal cavity and induces a nerve reflex, likely mediated via the trigeminal nerve and transmitted to brainstem with possible effects on the vagus nerve.”

INMEST produced a 30% reduction in symptom intensity after 8 weeks. There were also measurable changes in immune measurements.

ME patients were required to visit the clinic twice weekly for 8 weeks in order to receive treatments and provide blood samples as well as respond to questionnaires. All of these activities were very demanding and caused deterioration in some patients that obscure some of the possible benefits of the therapy. No significant improvement in fatigue was found. In the future a more sustainable way of using INMEST
would be in the form of a self-treatment device used by subjects and care takers at home.

 

Achieving symptom relief in patients with Myalgic encephalomyelitis by targeting the neuro-immune interface and optimizing disease tolerance, by Lucie Rodriguez, Christian Pou, Tadepally Lakshmikanth, Jingdian Zhang, Constantin Habimana Mugabo, Jun Wang, Jaromir Mikes, Axel Olin, Yang Chen, Joanna Rorbach, Jan-Erik Juto, Tie Qiang Li, Per Julin, Petter Brodin in Oxford Open Immunology [doi.org/10.1093/oxfimm/iqad003] 17 April 2023

Research abstract: 

Myalgic encephalomyelitis, ME, previously also known as chronic fatigue syndrome (CFS) is a heterogeneous, debilitating syndrome of unknown etiology responsible for long-lasting disability in millions of patients worldwide.

The most well-known symptom of ME is post-exertional malaise, but many patients also experience autonomic dysregulation, cranial nerve dysfunction and signs of immune system activation. Many patients also report a sudden onset of disease following an infection.

The brainstem is a suspected focal point in ME pathogenesis and patients with structural impairment to the brainstem often show ME-like symptoms. The brainstem is also where the vagus nerve originates, a critical neuro-immune interface and mediator of the inflammatory reflex which regulate systemic inflammation.

Here we report the results of a randomized, placebo-controlled trial using intranasal mechanical stimulation (INMEST) targeting nerve endings in the nasal cavity, likely from the trigeminal nerve, possibly activating additional centers in the brainstem of ME-patients and correlating with a ∼30% reduction in overall symptom scores after eight weeks of treatment.

By performing longitudinal, systems-level monitoring of the blood immune system in these patients, we uncover signs of chronic immune activation in ME, as well as immunological correlates of improvement that center around gut-homing immune cells and reduced inflammation.

The mechanisms of symptom relief remains to be determined, but transcriptional analyses suggest an upregulation of disease tolerance mechanisms. We believe that these results are suggestive of ME as a condition explained by a maladaptive disease tolerance response following infection.

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#newWAMESwebsite – Another donation brings our new website closer!

Posted on 04/20/2023 by wames

Another donation brings our new website closer!

 

A big thank you to the donors who contributed through PayPal to give us another £50 towards purchasing a new WAMES website. We now have reached £450 of our £1500 goal.

#newWAMESwebsite

Donating while you shop is an easy way to give but you can also raise money for WAMES at NO cost to you through EasyFundraising.

Find out more about our #newWAMESwebsite plans

Donate with PayPal & eBAY

Shop and fundraise through EasyFundraising

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The role of psychotherapy in the care of ME/CFS

Posted on 04/14/2023 by wames

Psychotherapy and ME/CFS

 

A group of European psychologists and researchers say that although ME/CFS is a physical, not a psychosomatic illness, psychotherapeutic help could improve the mental well-being and coping strategies of numerous people with ME/CFS. They suggest a form of ME/CFS-adapted psychotherapy that tackles emotional needs and supports pacing to minimise post-exertional malaise (PEM).

Psychotherapy is the general term for treating psychological disorders and mental distress through verbal and psychological techniques… also commonly known as talk therapy, counselling, psychosocial therapy, or simply therapy… almost all types of psychotherapy involve developing a therapeutic relationship, communicating, and working to overcome problematic thoughts or behaviours. [Simply Psychology]

The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by  Tilman Grande, Bettina Grande, Patrick Gerner, Sabine Hammer, Michael Stingl, Mark Vink and Brian M Hughes, in Medicina Vol 59 Issue 4 [DOI:10.3390/medicina59040719]  6 April 2023 (This article belongs to the Special Issue Advances in ME/CFS Research and Clinical Care)

Article abstract:

Myalgic encephalomyelitis/chronic fatigue (ME/CFS) is a post-infectious, chronic disease that can lead to severe impairment and, even, total disability. Although the disease has been known for a long time, and has been coded in the ICD since 1969 (G93.3), medical research has not yet been able to reach a consensus regarding its physiological basis and how best to treat it.

Against the background of these shortcomings, psychosomatic disease models have been developed and psychotherapeutic treatments have been derived from them, but their empirical testing has led to sobering results. According to the current state of research, psychotherapy and psychosomatic rehabilitation have no curative effect in the treatment of ME/CFS.

Nevertheless, we see numerous patients in practices and outpatient clinics who suffer severely as a result of their illness and whose mental well-being and coping strategies would benefit from psychotherapeutic help.

In this article, we outline a psychotherapeutic approach that serves this need, taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention.

Conclusion

There are several important and clear distinctions to be made between the pacing-led ME/CFS treatment approach that is outlined above and in many of the so-called ‘standard’ psychotherapeutic techniques that are often used with patients in health contexts.

Challenging patients’ cognitions and stress limits is so elementary to routine psychotherapeutic/ psychosomatic care that doubts about so-called ‘modifications’ in the sense of a ‘particularly careful’ approach to ME/CFS patients are, in our opinion, justified. However, conventional approaches involve unfulfillable therapeutic promises and the serious danger of deterioration.

We, therefore, believe that a radical paradigm shift is needed in psychotherapy, health psychology, and other fields where psychosocial and behavioral support is provided to ill people, and which recognizes the somatic nature of ME/CFS and adjusts therapeutic goals accordingly. A particular imposition of ME/CFS is the phenomenon of PEM, whose control by means of pacing demands a high degree of vigilance, discipline, and renunciation from the patients. This means an enormous challenge for those affected, which is not encountered in this specific way in other chronic diseases.

A psychotherapy that takes these realities into account and offers help in coping with them can make an important and, in our view, an indispensable contribution to the care of ME/CFS patients

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WAMES Easter helpline closure

Posted on 04/06/2023 by wames

WAMES helpline hours

 

The WAMES helpline is run by volunteers and will be closed over the long Easter weekend. 

helpline@wames.org.uk  0290 2051 5061

 

Support bricks

The helpline will be closed from 5pm Thursday 6 April – 10am Tuesday 11 April 2023.

Normal hours are 10am – 7pm

 

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
  • IM/Webchat: www.meic.cymru
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World ME Day posters launched: PEM

Posted on 04/06/2023 by wames

World ME Day posters launched exploring the 2023 theme

 

As we approach World ME Day on May 12th, the World ME Alliance is excited to announce the launch of six new graphics that explore different aspects of post-exertional malaise (PEM). These graphics are available for download and use by anyone, with the aim of raising awareness about the impact of ME on those living with the disease.

Post-exertional malaise is the hallmark symptom of ME, and is experienced by roughly half of those with long COVID, but what is it?

The disease where pushing harder can make you sicker.

PEM is a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness and is the hallmark symptom of ME.

For some patients, sensory overload (light and sound) can induce PEM.

PEM intensifies the severity of symptoms and may last days, weeks, or permanently. The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.

Our first graphic focuses on the term exertion, highlighting that this can mean many things, and not just exercise. In the image a women is standing up, giving a speech, in a room full of people. For someone with ME this means being cognitively active, physically active, emotionally active and managing significant sensory input – all of which can lead to post-exertional malaise.

Our second graphic deepens the understanding of sensory overload – be it light, sound, smell, touch or taste. It can come from everything everywhere all at once.

We also chose to focus on pacing in our third and fourth graphics, as this is the key technique people with ME can use to manage post-exertional malaise and avoid getting sicker from pushing harder.

It is deeply important to our Alliance that we highlight the 25% of people with ME who are housebound or bedbound. For these individuals post-exertional malaise is even more extreme, potentially rendering them unable to eat or drink for periods of time and unable to speak. Some live in darkened rooms 24 hours a day, because of the impact of sensory overload.

Finally, we chose to emphasise that different symptoms can get worse for different people. There is no one-size-fits-all when it comes to ME, and while one person may suffer extreme brain fog and pain during post-exertional malaise, another may get new or worsening gastrointestinal symptoms.

All of these graphics are available for free download on the worldmeday.org website. By using these graphics on social media, websites, or other platforms, you can help raise awareness of PEM and its impact on those with ME. Together, we can work towards a better understanding of this debilitating illness.

We look forward to sharing more resources with you in the coming weeks. We will be creating opportunities for you to learn more about PEM, or share your lived experience of this hallmark aspect of ME.

WAMES is a founder member of the World ME Alliance

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Research review: Sleep disruption in ME/CFS

Posted on 04/06/2023 by wames

Measurable sleep disruption in ME/CFS 

Australian researchers reviewed the research which used objective measures, rather than patient surveys, to uncover the type and extent of sleep disruption in ME/CFS.

Adult ME/CFS patients:

  • spend longer time in bed
  • longer sleep onset latency (the time it takes to fall asleep after turning the lights out)
  • longer awake time after sleep onset
  • reduced sleep efficiency (% of time asleep while in bed)
  • decreased stage 2 sleep
  • more Stage 3, and longer rapid eye movement sleep latency

Adolescent ME/CFS patients had:

  • longer time in bed
  • longer total sleep time
  • longer sleep onset latency (the time it takes to fall asleep)
  • reduced sleep efficiency (% of time spent asleep while in bed)

The four broad stages of Non Rapid Eye Movement sleep include:

  • stage 1 – dozing or drowsiness – you hover between being asleep and awake
  • stage 2 –you lose awareness of your surroundings, your body temperature starts to drop and your breathing and heart rate slow down
  • stages 3 and 4 – deep sleep, also known as ‘delta sleep’ – your blood pressure, heart rate and breathing become very slow and your muscles relax. Growth and repair processes occur during this stage. [from: Sleep explained]

 

Objective sleep measures in chronic fatigue syndrome patients: a systematic review and meta-analysis, by Abdalla Z Mohamed, Thu Andersen, Sanja Radovic, Peter Del Fante, Richard Kwiatek, Vince Calhoun, Sandeep Bhuta, Daniel F Hermens, Jim Lagopoulos, Zack Y Shan in Sleep Medicine Reviews Vol 69, June 2023 [doi.org/10.1016/j.smrv.2023.101771]

 

Research abstract

Patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often report disrupted and unrefreshing sleep in association with worsened fatigue symptoms.

However, the nature and magnitude of sleep architecture alteration in ME/CFS is not known, with studies using objective sleep measures in ME/CFS generating contradictory results. The current manuscript aimed to review and meta-analyse of case-control studies with objective sleep measures in ME/CFS. A search was conducted in PubMed, Scopus, Medline, Google Scholar, and Psychoinfo databases.

After review, 24 studies were included in the meta-analysis, including 20 studies with 801 adults (ME/CFS = 426; controls = 375), and 4 studies with 477 adolescents (ME/CFS = 242; controls = 235), who underwent objective measurement of sleep.

Adult ME/CFS patients spend longer time in bed, longer sleep onset latency, longer awake time after sleep onset, reduced sleep efficiency, decreased stage 2 sleep, more Stage 3, and longer rapid eye movement sleep latency.

However, adolescent ME/CFS patients had longer time in bed, longer total sleep time, longer sleep onset latency, and reduced sleep efficiency.

The meta-analysis results demonstrate that sleep is altered in ME/CFS, with changes seeming to differ between adolescent and adults, and suggesting sympathetic and parasympathetic nervous system alterations in ME/CFS.

This research paper is behind a paywall but “Patients and caregivers can make requests for individual papers… at no cost.”

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