World ME Day: making PEM visible

Posted on 05/09/2023 by wames

World ME Day – 12 May 2023

 

This year for World ME Day people living with ME want to make post-exertional malaise (PEM) visible.

What is post-exertional malaise, and why are we focusing on it?

Post-exertional malaise (PEM) is something that everyone with ME experiences.

It is when symptoms become worse after:

  • physical, mental or emotional exertion
  • sensory overload (light and sound)

This is the hallmark symptom of ME.

Symptoms can become more severe for days, weeks, or permanently. The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.

When it comes to ME, it’s crucial to understand that pushing harder can make you sicker. You cannot exercise your way out of ME but also for many people even simple activities like taking a shower or having a conversation can cause a flare-up of symptoms. The more severely affected may have to choose between brushing their teeth or washing their face as both activities could be too much.

This is the aspect of the disease that people living with ME want you to understand. Although there is no cure, there are management strategies which can help to minimise the effects.

ME: the disease where pushing harder can make you sicker

Long COVID means millions more are experiencing post-exertional malaise

Before the COVID-19 pandemic hit, there were between 17 and 30 million people living with ME worldwide. But now there are 65 million people living with long COVID, and half of those individuals are experiencing post-exertional malaise. (The population of the UK is estimated to be 68,890,500 in 2023!)

This means the number of people living with ME has likely doubled over the past 3 years.

Find out more from WAMES and the World ME alliance

New factsheet about ME in many languages including English here and Welsh here and English easy format here.

Images to share   World ME Day posters  – World ME Alliance

Videos to share 

Post Exertional Malaise – triggers, symptoms, management

What is Post-Exertional Malaise (PEM)? Is it avoidable? – explains the energy envelope

 

 

 

 

 

Images to share   World ME Day posters launched exploring the 2023 theme – World ME Alliance

 

WAMES – the Welsh Association of ME & CFS Support

WAMES (Working for ME in Wales) | Welsh Association of ME & CFS Support

 

 

 

 

 

 

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Video yourself for World ME Day 2023!

Posted on 05/05/2023 by wames

Call-to-action: Video yourself for World ME Day 2023!

Follow Holly’s example and tell the world what happens when pushing harder makes you sicker,  for World ME Day on May 12th.

ME, or Myalgic Encephalomyelitis, is a debilitating disease that affects millions of people worldwide. One of the most debilitating symptoms of ME is post-exertional malaise (PEM) – where pushing harder can make you sicker.

WAMES is joining with other members of the World ME Alliance in inviting people with ME to share your experiences of post-exertional malaise (also called post exertional symptom exacerbation, PESE) by recording short videos of yourselves in your native language. Sharing true stories from lived experience is incredibly powerful.

Take action in 5 steps!

  1. Take a video of yourself
  2. Start by saying “I live with a disease where pushing harder can make me sicker…”
  3. Tell the camera what happens when you push through
    Share your video to social media, using the hashtags #WorldMEDay and #LearnFromME
  4. Tag @WorldMEAlliance and @wamesmecfs so we can repost your video

By sharing your story, you can help raise awareness of this disease and the impact it has on your life, and that of millions of others around the world.

Sharing your experience can also help to educate others about the reality of ME. All too often, people with ME are dismissed or not believed when they talk about their symptoms. By sharing your story, you can help to break down the misconceptions surrounding ME and help others understand this disease.

Not sure what to say?

If you’re not sure what to say about your experience, here are a few prompts to help you get started:

  • What triggers your post-exertional malaise?
  • How does post-exertional malaise affect your daily life?
  • What does it feel like when you experience post-exertional malaise?
  • How long does post-exertional malaise last for you
  • What do you want the world to know about ME this World ME Day?

Get help to make a video

We’ve also put together this short guide to taking a high quality film using your smartphone. And #MEAction have storytelling training happening this year too.

Once you’ve made your video, remember to post it to social media on May 12th using the hashtags #WorldMEDay and #LearnFromME.

Tag @WorldMEAlliance and @wamesmecfs so we can repost your video!

We understand that sharing your story can be difficult, but know that your voice matters. By sharing your experience, you can help to make a difference and raise awareness of this often-misunderstood disease.

We encourage everyone to listen to the stories shared on World ME Day and to take the time to learn more about this debilitating disease. Together, we can work towards a better understanding of ME and a brighter future for those living with this disease.

 

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OMF StudyME – register of willing research participants

Posted on 05/03/2023 by wames

StudyME – research participant registry

 

The Open Medicine Foundation (OMF) in the US invites you to help speed up the research process!

StudyME is a participant registry which will connect those who want to participate in research studies (wherever you live) to the researchers who conduct them.

Signing up is easy and takes less than five minutes.

All you need to do is:

  • provide your contact details and
  • specify your areas of interest.

Once you’ve done this, you’ll be sent email notifications whenever there are research opportunities that align with your interests to potentially participate in surveys, laboratory studies, or treatment trials.

STAND UP AND BE COUNTED

Let’s show the world how many people want a cure

StudyME wants to enrol 100,000 participants, comprising of individuals afflicted with #MECFS, #LongCOVID, #Fibromyalgia and related post-infection illnesses, as well as healthy volunteers.

StudyME makes recruiting faster, promotes global collaboration and will help make it easier for researchers to get grants with a large and diverse pool of participants.

Find out more and sign up

 

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MRC invites ME/CFS research applications

Posted on 05/02/2023 by wames

Researching ME/CFS: highlight notice

 

The Medical Research Council (MRC) invites applications from researchers that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership for ME/CFS research:

  • post-exertional malaise
  • use of existing drugs for other conditions
  • diagnosis
  • autoimmunity
  • ME/CFS sub-types
  • post-infective cause
  • neurological symptomology
  • genetics
  • severe ME/CFS
  • mitochondrial dysfunction
  • oxygenation dysfunction

The MRC will usually fund up to 80% of a project’s full economic cost.

Find out more

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Make a social media poster for World ME Day 2023!

Posted on 05/01/2023 by wames

Call to action: Make your own World ME day poster

 

Demonstrate the reality of living with ME for World ME Day 2023 on May 12th 2023.

Let’s make post-exertional malaise visible

Share the reality of how pushing harder can make you sicker. WAMES and fellow World ME Alliance members are calling on all people with ME and carers to demonstrate the reality of living with ME for World ME Day 2023.

When it comes to ME, it’s crucial to understand that pushing harder can make you sicker. This is a fundamental aspect of the condition that is often misunderstood by those who are not familiar with it.

Post-exertional malaise, which is a hallmark symptom of ME, means that even simple activities like taking a shower or having a conversation can cause a flare-up of symptoms that can last for days or even weeks.

Make your poster

The custom poster maker launched by the World ME Alliance is an important tool for raising awareness about the reality of post-exertional malaise and the need for understanding and support for those with ME. 

By creating and sharing posters that reflect the experience of living with ME, we can help to educate the public about the impact of this disease on people’s lives.

Using the poster maker is easy

  • choose from a range of pre-designed templates
  • add your photo
  • write about your experience of post-exertional malaise.

Then download the poster and share it on social media with the hashtags #WorldMEDay and #LearnFromME.

To make the most impact, share a poster on May 12th itself, as well as in the run up to the day.

 

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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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