World ME day 2023 – theme: PEM

Posted on 02/07/2023 by wames

2023 World ME Day campaign announced

 

From the World ME Alliance:

The theme for World ME Day 2023 will be the hallmark symptom of ME: post-exertional malaise. The campaign is all about changing the narrative, so that globally people begin to understand this disease more accurately. That’s why our tagline this year is “ME: the disease where pushing harder can make you sicker”.

Our 21 member organisations and countless individuals will be collaborating across the globe to get this message out for May 12th.

We’re going to keep using the hashtag #LearnFromME, because we know the ME community has incredible knowledge and expertise to share, and everyone can #LearnFromME. Whether you are a health professional, a friend, a family member, a politician, a healthcare commissioner, or a member of the public: ME is a disease that we can and should learn from.

So 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 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.

When someone hears about ME, we want this key aspect of the disease to be the first thing that comes to mind.

This is the story of ME that needs to be known, and learnt from.

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.

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

ME: the disease where pushing harder can make you sicker

Our 21 member organisations spanning 14 countries are all getting behind World ME Day and the focus on post-exertional malaise for 2023.

We plan to:

  • Define the story of ME around this core worsening of symptoms
  • Connect and build alongside those with long COVID
  • Create resources to help everyone #LearnFromME and post-exertional malaise
  • Lobby decision-makers globally for more research and better education around post-exertional malaise

In the run up to May 12th we’ll be creating ways for you to share your story of post-exertional malaise, or learn about this core aspect of ME and the impact it has.

 

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Research: Transcriptomics: female ME/CFS patients responded differently to an exercise challenge

Posted on 02/04/2023 by wames

Disrupted immune signatures found in females with ME/CFS

 

US researchers found that female ME/CFS patients responded differently to an exercise challenge that stimulates PEM, compared to healthy females.  They studied the RNA molecules in the cells (transcriptomics).

The ME/CFS patients did not show significant changes in gene expression, while the healthy patients did.

During the recovery period (commonly when PEM begins), the ME/CFS patients showed an abnormal immune and cellular response.

“The unique functional pathways identified provide a foundation for future research efforts into the disease, as well as for potential targeted treatment options.”

Stress-Induced Transcriptomic Changes in Females with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Reveal Disrupted Immune Signatures, by Derek J Van Booven, Jackson Gamer, Andrew Joseph, Melanie Perez, Oskar, Zarnowski, Meha Pandya, Fanny Collado, Nancy Klimas, Elisa Oltra and Lubov Nathanson in Int. J. Mol. Sci. 2023, 24(3) [10.3390/ijms24032698]

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex multi-organ illness characterized by unexplained debilitating fatigue and post-exertional malaise (PEM), which is defined as a worsening of symptoms following even minor physical or mental exertion.

Our study aimed to evaluate transcriptomic changes in ME/CFS female patients undergoing an exercise challenge intended to precipitate PEM. Our time points (baseline before exercise challenge, the point of maximal exertion, and after an exercise challenge) allowed for the exploration of the transcriptomic response to exercise and recovery in female patients with ME/CFS, as compared to healthy controls (HCs).

Under maximal exertion, ME/CFS patients did not show significant changes in gene expression, while HCs demonstrated altered functional gene networks related to signaling and integral functions of their immune cells.

During the recovery period (commonly during onset of PEM), female ME/CFS patients showed dysregulated immune signaling pathways and dysfunctional cellular responses to stress. The unique functional pathways identified provide a foundation for future research efforts into the disease, as well as for potential targeted treatment options.

Health rising: Exercise triggers major immune system letdown in ME/CFS

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Treatment harms to patients with ME/CFS – GET & CBT

Posted on 02/02/2023 by wames

A review of treatment harms to patients with ME/CFS

 

Psychologist and researcher Dr David F Marks believes that as there is growing evidence that ME/CFS and PASC have similar symptoms “it seems highly possible that the same therapeutic approaches will be offered to patients with PASC as have already been tried with patients with ME/CFS.

It is timely to review the evidence on the potential harms of such treatments, one of which is Graded Exercise Therapy (GET) and another that is often combined with GET, Cognitive Behaviour Therapy (CBT).

Despite the evidence of physiological and cellular abnormalities in ME and CFS, these approaches follow the biopsychosocial model (BPSM) claimed by the discredited Psychosomatic School to legitimize the use of CBT and GET for patients with ME/CFS .

A recent review concluded:
The evidence …suggests that none of these psychosomatic hypotheses is empirically supported. The lack of robust supportive evidence together with the use of fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and an unwillingness to share data all give the appearance of cargo cult science.

The psychosomatic approach needs to be replaced by a scientific, biologically grounded approach to MUS/ME/CFS that can be expected to provide patients with appropriate care and treatments.

Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties.”

Read the paper for full conclusions and an overview of the work of:

  • Twisk and Maes (2009)
  • Kindlon (2011) and (2017)
  • Vink and Vink-Niese (2018)
  • Geraghty and Blease (2019)
  • McPhee, Baldwin, Kindlon and Hughes (2019)
  • Friedberg, Sunnquist and Nacul (2020)
  • NICE Draft Guidance (2020)

Treatment Harms to Patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by David F Marks in Adv Bioeng Biomed Sci Res, 6(1), 01-04, Feb 2022

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Hypothesis: Cerebrospinal fluid pressure increase in CFS & FM

Posted on 01/31/2023 by wames

The role of increased cerebrospinal fluid pressure in CFS and FM

 

Belgian researchers reviewed research literature to find characteristics signs that are shared with empty sella syndrome and suggest that moderate or intermittent increases in cerebrospinal fluid pressure are involved in causing FM and CFS and should stimulate further research into the causes of these conditions.

Review Plain Language Summary:

The cause of fibromyalgia (FM) and chronic fatigue syndrome (CFS) is not yet elucidated. Disturbances in the interactions between the hypothalamus, pituitary gland, and adrenal glands (the hypothalamo-pituitary-adrenal (HPA) axis) in FM and CFS may result in abnormal hormone production.

However, a novel hypothesis proposes that moderate increases in cerebral and spinal fluid pressure may underlie both FM and CFS. Increased cerebral pressure may impede blood flow in the pituitary gland, resulting in hormonal disturbances.

Indeed, it is well known that severely increased cerebral pressure can cause compression and flattening of the pituitary gland, potentially leading to pituitary hormone deficiency, termed empty sella syndrome. The sella (turcica) is a saddle-shaped notch in the bone at the base of the skull where the pituitary gland is located.

A search of the scientific literature revealed that increased cerebrospinal fluid pressure, obesity, female sex, headache and migraine, fatigue, visual disturbances, vertigo, hearing loss, and widespread pain were all more prevalent in empty sella, FM and CFS patients than in healthy individuals.

Furthermore, it was demonstrated that the injection of substances to stimulate pituitary hormone production resulted in similar responses, including reduced cortisol, growth hormone, luteinizing hormone, and thyroid-stimulating hormone production and increased prolactin production, in all three conditions compared to healthy individuals.

The findings of this review provide further support for the hypothesis that moderate or intermittent increases in cerebrospinal fluid pressure are involved in the pathogenesis of FM and CFS and should stimulate further research into the causes of these conditions.

The link between Empty Sella Syndrome, Fibromyalgia, and Chronic Fatigue Syndrome: The role of increased cerebrospinal fluid pressure, by Mieke Hulens, Wim Dankaerts, Ricky Rasschaert, Frans Bruyninckx, Peter De Mulder, Chris Bervoets in Journal of Pain Research 2023:16, Pages 205—219 [doi.org/10.2147/JPR.S394321] 25 January 2023

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#WAMES_800 fundraising target reached!

Posted on 01/26/2023 by wames

£800 raised will keep WAMES working during 2023

 

Grateful thanks goes to the Carmarthenshire ME Support Group for donating £100. This means we have reached our #WAMES_800 fundraising goal and we will be able to pay bills for running costs during 2023.

Thanks to all who have played a part in this great achievement by donating, shopping and fundraising. Financial pressures are increasing for all of us, but when many people make time to shop through a fundraising scheme or donate small amounts of money this can add up to enough to make a difference.

Make fundraising a habit

But… that is not the end of our fundraising unfortunately! We invite you to adopt a WAMES fundraising habit to ensure we reach 2024 financially secure. Every little counts!

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Call for WHO to recognise energy limiting disabilities

Posted on 01/26/2023 by wames

World ME Alliance highlights energy limiting disabilities

 

As a founding member of  the World ME Alliance WAMES joins ME organisations round the world in calling for better understanding in the WHO of the challenges people with ME and long COVID experience when trying to access healthcare.

Highlighting critical gaps in the WHO “Global report on health equity for persons with disabilities”

On the 2nd December 2022, the World Health Organization (WHO) published an important global report on health equity for persons with disabilities. The report is based upon the principle that persons with disabilities have the right to the highest attainable standard of health as those without disabilities.

It demonstrates that while some progress has been made in recent years, the world is still far from realizing this right for many persons with disabilities who continue to die earlier, have poorer health, and experience more limitations in everyday functioning than others.

The World ME Alliance and our members were pleased to see recognition of the poor health outcomes persons with disabilities face alongside actions to address this.

However, on reading the report we felt there were significant gaps around the distinct stigma and access barriers facing those with energy limiting disabilities, in particular myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID.

Our 21 members therefore joined together in writing a response to the report, and calling on the WHO to more fully integrate those with energy-limiting disabilities such as ME/CFS and long COVID into the upcoming “Guide for Action” being developed to support countries to implement the recommendations on improving health equity.

We included three recommendations:

  1. We recommend the creation of a committee or working group for the WHO for those disabled by energy-limiting illnesses – thus creating a mechanism for securing input from that community in the future.
  2. We suggest a section in the “Guide for Action” describing energy-limiting disabilities, and including a definition of post-exertional malaise. We believe it would be beneficial to include a story from someone with an energy-limiting disability in this toolkit.
  3. We noticed that the report mentioned on page 26 that the “evidence on how COVID-19 impacts disability prevalence in populations is still evolving,” and would instead contend that there has been a large amount of research clearly demonstrating the disabling impacts of COVID-19. We recommend an update to this section, or a section defining post-viral illness, in the upcoming “Guide for Action.” This would create an acknowledgement of research advances which have been made both in defining the scope of the disabling and long-term effects that people experience post-COVID, and in assessing the breadth of the impact societally.

We are hopeful that the WHO will work with us and other organizations to achieve better awareness of energy-limiting disabilities in their work going forwards, and look forward to their response.

Read the full letter

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Research – active HHV-6 & EBV infection found in ME/CFS

Posted on 01/23/2023 by wames

Active viruses found in people with ME/CFS

 

Fluorescence microscope

A German US collaboration examined tissue from the bodies of people who had had ME/CFS. They found active infection from Human herpes virus (HHV) and Epstein Barr Virus (EBV) in various regions of the human brain and associated tissues including the spinal cord, that is only detected in ME/CFS patients and not in controls. This would have been difficult to find when they were alive.

We hypothesized that it is not the latency itself but a timely, regionally restricted viral reactivation in a sub-set of host cells that plays a key role in disease development.

 

Tissue specific signature of HHV-6 infection in ME/CFS, by  Francesca Kasimir, Danny Toomey, Zheng Liu, Agnes C Kaiping, Maria Eugenia Ariza, Bhupesh K Prusty in Front Mol Biosci. 2022 Dec 14;9:1044964 [doi:10.3389/fmolb.2022.1044964]

Research abstract:

First exposure to various human herpesviruses (HHVs) including HHV-6, HCMV and EBV does not cause a life-threatening disease. In fact, most individuals are frequently unaware of their first exposure to such pathogens. These herpesviruses acquire lifelong latency in the human body where they show minimal genomic activity required for their survival.

We hypothesized that it is not the latency itself but a timely, regionally restricted viral reactivation in a sub-set of host cells that plays a key role in disease development.

HHV-6 (HHV-6A and HHV-6B) and HHV-7 are unique HHVs that acquire latency by integration of the viral genome into sub-telomeric region of human chromosomes.

HHV-6 reactivation has been linked to Alzheimer’s Disease, Chronic Fatigue Syndrome, and many other diseases. However, lack of viral activity in commonly tested biological materials including blood or serum strongly suggests tissue specific localization of active HHV-6 genome.

Here in this paper, we attempted to analyze active HHV-6 transcripts in postmortem tissue biopsies from a small cohort of ME/CFS patients and matched controls by fluorescence in situ hybridization using a probe against HHV-6 microRNA (miRNA), miR-aU14.

Our results show abundant viral miRNA in various regions of the human brain and associated neuronal tissues including the spinal cord that is only detected in ME/CFS patients and not in controls.

Our findings provide evidence of tissue-specific active HHV-6 and EBV infection in ME/CFS, which along with recent work demonstrating a possible relationship between herpesvirus infection and ME/CFS, provide grounds for renewed discussion on the role of herpesviruses in ME/CFS.

see also:  Epstein Barr virus found in ME/CFS

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ME/CFS & Post-COVID Syndrome: a common neuroimmune ground

Posted on 01/20/2023 by wames

ME/CFS and Post-COVID syndrome – close relationship

 

Russian researchers analysed the wide range of symptoms in people with ME/CFS and in those with long COVID, many of  whom met the criteria for ME/CFS. The symptoms fell into the categories of PEM, immune dysfunction and disorder of the nervous system, leading them to agree with “the concept of ME/CFS as a disease with neuroimmune pathogenesis”.

Lab tests also found a reduction in blood circulation in the smallest blood vessels which affect blood pressure and responses to inflammation. In addition anxiety and depressive symptoms were no more common in patients with ME/CFS and healthy individuals.

Conclusions

  1. Among patients with symptoms persisting for more than 12 weeks after recovery from acute COVID-19, 100% of individuals met the diagnostic criteria for ME/CFS, which confirms the presence of a close relationship between post-COVID syndrome and ME/CFS.
  2. We found a statistically significant positive relationship between fatigue that does not get better with adequate rest and 20 other symptoms of ME/CFS related to the domains of “post-exertional exhaustion” (7 symptoms), “immune dysfunction” (4 symptoms), “sleep disturbances” (4 symptoms), “dysfunction of the autonomic nervous system” (2 symptoms), “neurological sensory/motor disorders” (2 symptoms), and “pain syndromes” (1 symptom). These data not only agree with the concept of ME/CFS as a disease with neuroimmune pathogenesis but also allow us to make assumptions about the approaches to the diagnosis, treatment, and organization of care for patients with ME/CFS. This confirms the validity of the [EUROMENE] treatment approach to ME/CFS… to reduce the severity of fatigue, patients are provided first of all with symptomatic help to normalize sleep and combat pain.
  3. There was no correlation between anxiety/depressive symptoms and the severity of fatigue in ME/CFS. This can indirectly show that fatigue in ME/CFS is not a consequence of primary mental disorders.
  4. Immune dysfunction was detected in 12/12 patients with ME/CFS (100%) based on the analysis of the results of the laboratory screening immunological evaluation.
  5. The prevalence of POTS in patients with ME/CFS, especially with ME/CFS of the post-COVID-19 nature, is high. Still, POTS in this group of patients can be difficult to diagnose due to its delayed occurrence in the active orthostatic test.
  6. Changes in microcirculation in ME/CFS (including ME/CFS of the post-COVID-19 nature) identified with the LDF method correspond to the hyperemic form of microcirculation disorders which is generally observed in acute inflammatory response or in case of the systemic vasoconstriction failure. It seems that increased vascular resistance may occur later in the disease course due to the chronic inflammatory process.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post-COVID Syndrome: A Common Neuroimmune Ground?, by Varvara A Ryabkova, Natalia Y Gavrilova, Tamara V Fedotkina, Leonid P Churilov, Yehuda Shoenfeld in Diagnostics (Basel). 2022 Dec 26;13(1):66 [doi: 10.3390/diagnostics13010066]

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease of unknown etiology, sharing a similar clinical presentation with the increasingly recognized post-COVID syndrome.

We performed the first cross-sectional study of ME/CFS in a community population in Russia. Then we described and compared some clinical and pathophysiological characteristics of ME/CFS and post-COVID syndrome as neuroimmune disorders.

Of the cohort of 76 individuals who suggested themselves as suffering from ME/CFS, 56 were diagnosed with ME/CFS by clinicians according to ≥1 of the four most commonly used case definitions.

Of the cohort of 14 individuals with post-COVID-19 syndrome, 14 met the diagnostic criteria for ME/CFS. The severity of anxiety/depressive symptoms did not correlate with the severity of fatigue either in ME/CFS or in post-COVID ME/CFS.

Still, a positive correlation was found between the severity of fatigue and 20 other symptoms of ME/CFS related to the domains of “post-exertional exhaustion”, “immune dysfunction”, “sleep disturbances”, “dysfunction of the autonomic nervous system”, “neurological sensory/motor disorders” and “pain syndromes”.

Immunological abnormalities were identified in 12/12 patients with ME/CFS according to the results of laboratory testing. The prevalence of postural orthostatic tachycardia assessed in the active orthostatic test amounted to 37.5% in ME/CFS and 75.0% in post-COVID ME/CFS (the latter was higher than in healthy controls, p = 0.02). There was a more pronounced increase in heart rate starting from the 6th minute of the test in post-COVID ME/CFS compared with the control group.

Assessment of the functional characteristics of microcirculation by laser doppler flowmetry revealed obvious and very similar changes in ME/CFS and post-COVID ME/CFS compared to the healthy controls. The identified laser doppler flowmetry pattern corresponded to the hyperemic form of microcirculation disorders usually observed in acute inflammatory response or in case of systemic vasoconstriction failure.

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Neuro Cafe, Aberystwyth 30 January 2023

Posted on 01/19/2023 by wames

Ceredigion neuro cafe

 

A get together for people affected by neurological conditions.

At Plas Antaron, Aberystwyth, SY23 1SF

11-1pm, 30 January, 27 February, 27 March 2023

Contact admin@hahav.org.uk  01970 611550

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Research: Muscle sodium overload in patients with ME/CFS

Posted on 01/19/2023 by wames

Muscle sodium content in patients with ME/CFS

 

A German team of researchers used magnetic resonance imaging (MRI) to measure levels of sodium in the tissues of the legs of people with ME/CFS and healthy people. Too much sodium can lead to muscle weakness. Too little can trigger spasms and cramping.

 

“This study provides evidence that sodium content of lower leg muscles is higher in ME/CFS than in healthy controls at rest and after exercise. Furthermore, our findings indicate an inverse correlation between mean muscle sodium content and handgrip strength. Thus, sodium overload may play a role in the pathophysiology of ME/CFS and may allow for potential treatment targeting.

This study demonstrates the feasibility of monitoring changes in muscle sodium content in ME/CFS and healthy subjects after exercise using 23Na-MRI.”

More information:

Muscle sodium content in patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Elisabeth Petter, Carmen Scheibenbogen, Peter Linz, Christian Stehning, Klaus Wirth, Titus Kuehne, Marcus Kelm in Journal of Translational Medicine Vol 20, #1, p 580 December 9, 2022

Research abstract:

Background: Muscle fatigue and pain are key symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Although the pathophysiology is not yet fully understood, there is ample evidence for hypoperfusion which may result in electrolyte imbalance and sodium overload in muscles.

Therefore, the aim of this study was to assess levels of sodium content in muscles of patients with ME/CFS and to compare these to healthy controls.

Methods: Six female patients with ME/CFS and six age, BMI and sex matched controls underwent 23Na-MRI of the left lower leg using a clinical 3T MR scanner before and after 3 min of plantar flexion exercise. Sodium reference phantoms with solutions of 10, 20, 30 and 40 mmol/L NaCl were used for quantification.

Muscle sodium content over 40 min was measured using a dedicated plugin in the open-source DICOM viewer Horos. Handgrip strength was measured and correlated with sodium content.

Results: Baseline tissue sodium content was higher in all 5 lower leg muscle compartments in ME/CFS compared to controls. Within the anterior extensor muscle compartment, the highest difference in baseline muscle sodium content between ME/CFS and controls was found (mean p/m SD; 12.20 p/m 1.66 mM in ME/CFS versus 9.38 p/m 0.71 mM in controls, p=0.0034).

Directly after exercise, tissue sodium content increased in gastrocnemius and triceps surae muscles with + 30% in ME/CFS (p=0.0005) and + 24% in controls (p=0.0007) in the medial gastrocnemius muscle but not in the extensor muscles which were not exercised. Compared to baseline, the increase of sodium content in medial gastrocnemius muscle was stronger in ME/CFS than in controls with + 30% versus + 17% to baseline at 12 min (p=0.0326) and + 29% versus + 16% to baseline at 15 min (p=0.0265). Patients had reduced average handgrip strength which was associated with increased average muscle tissue sodium content (p=0.0319, R2=0.3832).

Conclusion: Muscle sodium content before and after exercise was higher in ME/CFS than in healthy controls. Furthermore, our findings indicate an inverse correlation between muscle sodium content and handgrip strength. These findings provide evidence that sodium overload may play a role in the pathophysiology of ME/CFS and may allow for potential therapeutic targeting.

Dr Katrina Pearce comments on the MEA website:

  • People with ME/CFS are often advised to increase their sodium/salt intake to help with orthostatic intolerance, however, findings in this study would not be due to this as the differences are too large and excess sodium is excreted by the kidneys. Therefore, a lower dietary intake would not change the results.
  • In conclusion, there are some very clear significant findings in this study on a very small sample size, however,  more investigation is needed to explain these results, especially if potential treatments targeting the high sodium muscle content are to be considered.

Read more

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