It’s still ME – Kara Jane’s album launched for Severe ME Day

Posted on 08/08/2020 by wames

Kara Jane’s album launch – It’s still M.E.

 

At last I can say it – my album, It’s Still M.E., is out now! Please, please share the news with everyone you know. My story is told today on the BBC News site.

Where to buy my album

It’s Still M.E can be downloaded and streamed from major platforms.

My story

I’m seriously ill with a severe form of ME. I’ve been bed bound for many years and am dependent on oxygen and 24 hour nursing care. I’m frequently admitted to hospital with serious infections, and a few years ago doctors warned me that my life expectancy could be very limited.

From this place of suffering and despair, my album was born.

I began writing music to express my pain, and a family friend helped me to record the songs from my bed.  As I’m too ill to sing more than a line or two at a time, completing the vocals took a couple of years.

Recording from my bed

In May 2020, a BBC appeal resulted in over 100 musicians and producers coming forward to offer their help in completing the album.  An amazing team have dedicated the last few months to working on my music.  Thanks to them, my dream of releasing an album has now come true.

I’m aiming to raise £100,000 for research into severe ME. (More information here.)

How you can help

There are several ways that you can support me.

1 – Buy my album!  Every penny raised will go towards research into the severest cases of ME.    It will also help raise awareness of just how serious this illness can be.

2 – Donate to my fund.  If you wish to make a donation in addition to purchasing the album, please visit my Just Giving page.

3 – Spread the word about my album, on social media and in person.  (All my social media links are at the bottom of the page.) The more people we can reach, the greater the success of the project.

Album taster

 

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Severe ME resources for health and social care professionals

Posted on 08/08/2020 by wames

New WAMES website page for severe ME resources

 

A new page has been added to the professionals section of the website:

Severe ME Care Resources

The page highlights the need for a compassionate approach to care for a group of patients who are extremely hypersensitive to their environment and vulnerable to harm.

The Videos, books and information come from experienced sources such as Stonebird, Dialogues from ME, Dr Nigel Speight, Emily Collingridge etc.

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Severe ME Day – 8 August 2020

Posted on 08/08/2020 by wames

A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.

 


Severe ME Understanding & Remembrance Day :

This day aims to bring public attention to the illness for the sake of all those presently suffering from Severe Myalgic Encephalomyelitis and to remember all those who have died from ME.

A day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.

 

What’s the significance of 8th August?

This is the birth date of Sophia Mirza.  Sophia was bed-bound with severe Myalgic Encephalomyelitis and was a victim of medical abuse.  Her doctors did not believe that Myalgic Encephalomyelitis was a physical disease and so she was forcibly taken from her bed/home by social workers, police officers and doctors, and kept in a psychiatric facility where she received inappropriate treatment and care.  Sophia subsequently died of ME at the age of 32.  Her post-mortem revealed widespread inflammation in the spinal cord.  This same inexcusable abuse still goes on.

 

We remember all those died of ME/CFS in Wales, and those who gave up the fight:

  • Annabel Senior , 2003 – first known person in the UK to have CFS on the death certificate
  • Sarah Ann Tyler, 2017
  • Dr Martin Rhisiart, 2017

Please let us know if you’d like someone’s name to be added to the list.

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Autonomic phenotypes in CFS are associated with illness severity: a cluster analysis

Posted on 08/07/2020 by wames

Autonomic phenotypes in Chronic Fatigue Syndrome (CFS) are associated with illness severity: a cluster analysis, by Joanna Słomko, Fernando Estevez-Lopez, Sławomir Kujawski, Monika Zawadka-Kunikowska, Małgorzata Tafil-Klawa, Modra Murovska, Julia L Newton, Paweł Zalewski on behalf of the European Network on ME/CFS (EUROMENE) in J. Clin. Med. 2020, 9(8), 2531; [doi.org/10.3390/jcm9082531]

 

Research abstract:

In this study we set out to define the characteristics of autonomic subgroups of patients with Chronic Fatigue Syndrome (CFS). The study included 131 patients with CFS (Fukuda criteria).

Participants completed the following screening symptom assessment tools: Chalder Fatigue Scale, Fatigue Impact Scale, Fatigue Severity Scale, Epworth Sleepiness Scales,
the self-reported Composite Autonomic Symptom Scale.

Autonomic parameters were measured at rest with a Task Force Monitor (CNS Systems) and arterial stiffness using an Arteriograph (TensioMed Kft.).

Principal axis factor analysis yielded four factors: fatigue, subjective and objective autonomic dysfunction and arterial stiffness. Using cluster analyses, these factors were grouped in four autonomic profiles: 34% of patients had sympathetic symptoms with dysautonomia, 5% sympathetic alone, 21% parasympathetic and 40% had issues with sympathovagal balance.

Those with a sympathetic-dysautonomia phenotype were associated with more severe disease, reported greater subjective autonomic symptoms with sympathetic over-modulation and had the lowest quality of life. The highest quality of life was observed in the balance subtype where subjects were the youngest, had lower levels of fatigue and the lowest values for arterial stiffness. Future studies will aim to design autonomic profile-specific treatment interventions to determine links between autonomic phenotypes CFS and a specific treatment.

 

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Autoantibodies to Beta-Adrenergic & muscarinic cholinergic receptors in ME patients – a validation study in plasma & cerebrospinal fluid from two Swedish cohorts

Posted on 08/05/2020 by wames

Autoantibodies to Beta-Adrenergic and Muscarinic cholinergic receptors in Myalgic Encephalomyelitis (ME) patients – a validation study in plasma and cerebrospinal fluid from two Swedish cohorts, by Annie Bynke, Per Julin, Carl-Gerhard Gottfries, Harald Heidecke, Carmen Scheibenbogen, Jonas Bergquist in Brain, Behavior, & Immunity – Health Vol 7, August 2020 [doi.org/10.1016/j.bbih.2020.100107]

 

HIGHLIGHTS

  • Myalgic Encephalomyelitis (ME) is a devastating disorder (with millions of patients worldwide) with unclear etiology and no clear diagnostic biomarker available.
  • This study support previous findings that there exists a general pattern of increased antibody levels to adrenergic and muscarinic receptors within the ME patient group.
  • No evidence for intrathecal antibody production was found in cerebrospinal fluid. The role of increased autoantibodies in the pathogenesis of ME is still uncertain and further research is needed to evaluate the clinical significance of these findings.

Research abstract:

Myalgic encephalomyelitis (ME) also known as ME/CFS (Chronic Fatigue Syndrome) or ME/SEID (Systemic Exertion Intolerance Disorder), is a disabling and often long-lasting disease that can drastically impair quality of life and physical/social functioning of the patients.

Muscarinic acetylcholine receptor

Underlying pathological mechanisms are to a large extent unknown, but the presence of autoantibodies, cytokine pattern deviations and the presentation of cognitive and autonomic nervous system related symptoms provide evidence for ME being an immunological disorder with elements of autoimmunity. Increased levels of autoantibodies binding to adrenergic and muscarinic receptors in ME-patients have been reported. It is hypothesized that these autoantibodies have pathological significance and contribute to the ME-specific symptoms, however, these observations need to be validated.

This study was designed to investigate potential differences in adrenergic and muscarinic receptor autoantibody levels in plasma and cerebrospinal fluid (CSF) samples between ME patients and gender and age-matched healthy controls, and to correlate the autoantibody levels to disease severity.

We collected body fluids and health-related questionnaires from two Swedish ME cohorts, plasma and CSF from one of the cohorts (n=24), only plasma from the second cohort (n=24) together with plasma samples (n=24) and CSF (n=6) from healthy controls.

All samples were analyzed for IgG autoantibodies directed against Alpha- (α1, α2) and Beta- (β1-3) adrenergic receptors and Muscarinic (M) 1-5 acetylcholine receptors using an ELISA technique. The questionnaires were used as measures of disease severity.

Significant increases in autoantibody levels in ME patients compared to controls were found for M3 and M4 -receptors in both cohorts and β1, β2, M3 and M4- receptors in one cohort. No significant correlations were found between autoantibody levels and disease severity. No significant levels of autoantibodies were detected in the CSF samples. These findings support previous findings that there exists a general pattern of increased antibody levels to adrenergic and muscarinic receptors within the ME patient group. However, the role of increased adrenergic and muscarinic receptor autoantibodies in the pathogenesis of ME is still uncertain and further research is needed to evaluate the clinical significance of these findings.

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ME/CFS: efficacy of repeat immunoadsorption

Posted on 08/04/2020 by wames

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: efficacy of repeat Immunoadsorption, by  Markus Tölle, Helma Freitag, Michaela Antelmann, Jelka Hartwig, Mirjam Schuchardt, Markus van der Giet, Kai-Uwe Eckardt, Patricia Grabowski, and Carmen Scheibenbogen in J. Clin. Med. 2020, 9(8), 2443; [doi.org/10.3390/jcm9082443] Published: 30 July 2020

 

Research abstract:

(1) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex neuroimmunological disease.

There is evidence for an autoimmune mechanism for ME/CFS with an infection-triggered onset and dysfunction of ß2-adrenoreceptor antibodies (ß2AR-AB). In a first proof-of-concept study, we could show that IA was effective to reduce ß2AR-AB and led to improvement of various symptoms. (2)

Five of the ME/CFS patients who had clinical improvement following treatment with a five-day IA were retreated in the current study about two years later with a modified IA protocol. The severity of symptoms was assessed by disease specific scores during a follow-up period of 12 months. The antibodies were determined by ELISA. (3)

The modified IA treatment protocol resulted in a remarkable similar clinical response. The treatment was well tolerated and 80–90% decline of total IgG and ß2AR-AB was achieved. Four patients showed a rapid improvement in several clinical symptoms during IA therapy, lasting for six to 12 months. One patient had no improvement. (4)

We could provide further evidence that IA has clinical efficacy in patients with ME/CFS. Data from our pilot trial warrant further controlled studies in ME/CFS.

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Inclusion of family members without ME/CFS in research studies promotes discovery of biomarkers specific for ME/CFS

Posted on 08/04/2020 by wames

Inclusion of family members without ME/CFS in research studies promotes discovery of biomarkers specific for ME/CFS, by  in Work 2020 [DOI: 10.3233/WOR-203177]

 

Research abstract:

BACKGROUND:

The search for a biomarker specific for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has been long, arduous and, to date, unsuccessful. Researchers need to consider their expenditures on each new candidate biomarker. In a previous study of antibody-dependent cell-mediated cytotoxicity (ADCC) by natural killer lymphocytes, we found lower ADCC for ME/CFS patients vs. unrelated donors but ruled against low ADCC as a biomarker because of similar ADCC for patients vs. their family members without ME/CFS.

OBJECTIVE:

We applied inclusion of family members without ME/CFS, from families with multiple CFS patients, as a second non-ME/CFS control group in order to re-examine inflammation in ME/CFS.

METHOD:

Total and CD16A-positive ‘non-classical’ anti-inflammatory monocytes were monitored.

RESULTS:

Non-classical monocytes were elevated for patients vs. unrelated healthy donors but these differences were insignificant between patients vs. unaffected family members.

CONCLUSIONS:

Inclusion of family members ruled against biomarker considerations for the monocytes characterized. These pilot findings for the non-classical monocytes are novel in the field of ME/CFS. We recommend that occupational therapists advocate and explain to family members without ME/CFS the need for the family members’ participation as a second set of controls in pilot studies to rapidly eliminate false biomarkers, optimize patient antibody-dependent cell-mediated cytotoxicity participation, and save researchers’ labor.

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Impact of ME on treatment of comorbidities: a lived experience

Posted on 08/03/2020 by wames

Impact of myalgic encephalomyelitis on treatment of  comorbidities: a lived experience, by Denise Lopez-Majano in Work vol. 66, no. 2, pp. 309-313, 20 Jul 2020 [DOI: 10.3233/WOR-203175]

 

Abstract:

Myalgic Encephalomyelitis (ME) is a complex, chronic, disabling, multi-system disease with no FDA-approved treatments.

ME greatly impacts quality of life (QoL) with studies showing that people with ME often have worse quality of life than people with sickle cell anemia and cystic fibrosis, among other chronic diseases.

People with ME frequently have comorbidities, which, if treated, could improve quality of life. However, the pervasive impact of ME makes treatment of comorbidities difficult. When trying to treat comorbidities it is therefore important for rehabilitation specialists to understand the impact of ME on day-to-day life in order to avoid treatment-related harms or exacerbation of ME symptoms.

This article details the lived experience of one family in which both siblings have ME and comorbidities.

6   Recommendations based on our experiences

Because ME impacts every moment of the lives of people with ME, rehabilitation specialists (physical therapists, occupational therapists, etc.) must do the following in order to help people with ME:

  • understand PEM, hypersensitivities, reduced cognitive and physical resources, unrefreshing sleep, and pervasive exhaustion

  • streamline therapy for people with ME

  • reduce frequency/appointment duration/intensity of treatment but also expect treatment to take much longer than usual

  • be mindful that if the person with ME does not have a caregiver to help convey things, progress may be even slower due to the dual effort of communication and therapy

  • anticipate periods of time during which people with ME cannot attend appointments because of physical and cognitive limitations

  • ensure people with ME are not penalized for missed appointments

  • know that because of limited cognitive and physical resources it may be necessary to repeat exercises/activities and rephrase instructions to ensure they are accurately learned

  • keep in mind that each person with ME has different limits and these may also vary from one moment/hour/day to the next

  • know that when it comes to exertion, the person with ME must be the one to determine each time if exertion is in any way feasible

  • understand that assessment and treatment of comorbidities in people with ME requires flexibility on the part of rehabilitation specialists.

7  Conclusion

To ensure the greatest chance of successful treatment of comorbidities in people with ME, rehabilitation specialists must be cognizant of the impact of ME on cognitive and physical function and must individualize treatment modalities in order to accommodate persons with ME. Careful adaptation of treatment modalities will increase the possibility of successful treatment of comorbidities in people with ME.

 

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A proposal for explaining progression from light/moderate to severe chronic fatigue

Posted on 07/30/2020 by wames

A proposal for explaining progression from light/moderate to severe chronic fatigue, by Anna Dorothea Höck in ES Journal of Nutritional Health vol 1, no.2 Jun 11 2020

 

Research abstract:

Background:

Chronic mild to moderate fatigue is also called chronic idiopathic fatigue. Physicians at best consider psychotherapy for treatment. But most physicians do not view this condition as a real disease.

In contrast, debilitating chronic severe disease has been termed chronic fatigue syndrome (CFS), or if more severe, myalgic encephalopathy (CFS/ME). Meanwhile published metabolic aberrations in CFS/ME suggest estimating these diseases no longer as mere psychiatric diseases. The metabolic results inspire to further exploration of cell stress response mechanisms, which are summarized in this paper.

Interestingly, cell stress responses were tightly linked to vitamin D3 – mediated effects, such as homeostatic regulation of metabolism, energy and redox balance, as well as defense against pathogens and toxins. Specific personality traits, prevalence of indoor activities, latitude and climate predispose to vitamin D3 deficiency, which is supposed to represent a missing link for a comprehensive model of disease progression from mild chronic fatigue to most severe forms.

By diagnosing vitamin D deficiency in early stages of chronic fatigue, the progression to severe and debilitating chronic fatigue may be prevented. In more severe stages of chronic fatigue, such as CFS/ME, resistance against mere vitamin D replenishment seems to be the rule. Some causal mechanisms for this resistance and potential treatment options are shown.

Conclusion:

Scientific insight to the biomolecular mechanisms of cell homeostasis helps to understand and treat all clinically manifestations associated with different stages of chronic fatigue.

 

Excerpt from conclusion:

Physicians could be stimulated to revise their treatment regimens by omitting all interventions which induce further redox stress and xenobiotic burden. The drug
and chemical intolerances of CFS/ME patients call for only minor dosages of pain and psychoactive substances. Instead, restoration of effective VDR activity should be
targeted. This is assumed to stabilize a SIRT1/Nrf2-driven stress response.

This might be achieved by plant based diets and/or supplementations, such as those recommended by Naviaux et al. [8], and Xiao W 2018 [31], 8/10 including all B vitamins, and by supplements of vitamin D3 and minerals, which include calcium and magnesium,
in particular. Phosphate deficiency through long-standing vitamin D deficiency should be considered as well.

Due to presumed vitamin D3 resistance and to distinct genomic and translational vitamin D3 responses, personalized high doses such as 250 mcg cholecalciferol and up to 2400 mg calcium per day should be applied [57,58]. Careful clinical observations should clarify the potential reversibility of very severe and long-standing CFS/ME stages. In any case, any sort of stressful challenge, such as xenobiotics, drugs, nutrient additions, microwaves, and psychosocial stress, should be avoided as much as possible.

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What ME/CFS caregivers want you to know

Posted on 07/29/2020 by wames

What ME/CFS caregivers want you to know, by Bobbie Ausubel in Work vol. 66, no. 2, pp. 361-364, 2020 July 20 [DOI: 10.3233/WOR-203171]

 

Eight stories comprise this paper:

Stories were written in 2019 from caregivers, parents, and spouses, most of whom live with a pwME (person with ME). To protect those in our care, some authors have not used their full names.

Each patient suffers from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a neuro-immune disease which affects each person differently, with a great variety of symptoms and a wide spectrum of disease burden. The National Academy of Medicine says ME/CFS is three times more common in women than men (1), and they estimate that 80% of patients have not yet received a diagnosis (2).

Through their experiences caring for loved ones with ME/CFS, these caregivers have anecdotes and requests for future doctors and occupational therapists to assist with servicing their suffering pwMEs.

  • J., Mother and at-home caregiver of a pwME
  • Courtney Miller, at-home caregiver and wife of Robert Miller, an ME/CFS patient of 30 years
  • Elizabeth B. Burlingame, mother and at-home caregiver of a pwME
  • Katy C., mother of a pwME
  • Bev., mother of a pwME
  • Martin W., father of a pwME
  • B., mother of a pwME
  • M’Liz C., friend of two pwME

Read the stories

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