ME/CFS: major impact on lives of both patients & family members

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major impact on lives of both patients and family members, by Esme Brittain, Nina Muirhead, Andrew Y Finlay and Jui Vyas in Medicina 2021, 57(1), 43; [doi.org/10.3390/medicina57010043]  (This article belongs to the Special Issue ME/CFS: Causes, Clinical Features and Diagnosis)

 

Research abstract:

Background and objectives:

To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments.

Materials and Methods:

A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire.

Results:

ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores.

Conclusions:

This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

More about the study from Esme Brittain

Larger global Family Impact study from Cardiff University, deadline 5 Feb 2020

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Are circulating FGF21 & NT-proBNP promising novel biomarkers in ME/CFS

Are circulating FGF21 and NT-proBNP promising novel biomarkers in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome?, by Prof Joan Carles Domingo, Dr Begoña Cordobilla, Dr Roser Ferrer, Dr Marina Giralt, Dr Jose Alegre-Martin, and Dr Jesus Castro-Marrero in Antioxidants & Redox Signaling, 22 Dec 2020 [doi.org/10.1089/ars.2020.8230]

 

Research abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, disabling, and complex multisystem illness of unknown etiology. The protein FGF21 regulates glucose homeostasis and lipid metabolism, and the protein NT-proBNP is strongly associated with an elevated cardiovascular risk; however, little is known about their role in ME/CFS patients. To address this gap, we explored the association between FGF21 and NT-proBNP and oxidative stress and inflammatory markers in ME/CFS.

Twenty-one ME/CFS patients and 20 matched healthy controls were included in the study. Participants filled out validated self-reported questionnaires on their current health status covering demographic and clinical characteristics. Plasma showed significantly decreased total antioxidant capacity and increased lipoperoxides levels (p = 0.009 and p = 0.021, respectively) in ME/CFS. These ME/CFS patients also had significantly increased levels of inflammatory cytokines (IL-1β, IL-6, IL-10, TNF-α, and C-reactive protein (p < 0.05 for all) but not for IL-8 (p = 0.833) in ME/CFS, indicating low-grade systemic inflammation status.

Circulating FGF21 and NT-proBNP levels were significantly higher (p < 0.0001 and p = 0.005, respectively) in ME/CFS patients than in healthy controls. Significantly positive correlations were found between NT-proBNP levels and IL-1β and IL-6 (p = 0.04 and p = 0.01) in ME/CFS patients but not between FGF21 and these cytokines. In contrast, no significant correlations were found for either FGF21 or NT-proBNP in controls.

These findings lead to the hypothesis that elevated FGF21 and NT-proBNP levels and the association between NT-proBNP and inflammation may be promising novel diagnostic and therapeutic targets in ME/CFS.

Read full article

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The prospects of the two-day Cardiopulmonary Exercise Test (CPET) in ME/CFS patients

The prospects of the Two-Day Cardiopulmonary Exercise Test (CPET) in ME/CFS patients: a meta-analysis, by  Eun-Jin Lim, Eun-Bum Kang, Eun-Su Jang and Chang-Gue Son in JCM Vol 9 Issue 12 Dec 2020 [10.3390/jcm9124040] (This article belongs to the Special Issue Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Diagnosis and Treatment)

 

Review abstract:

Background:

The diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is problematic due to the lack of established objective measurements. Post-exertional malaise (PEM) is a hallmark of ME/CFS, and the two-day cardiopulmonary exercise test (CPET) has been tested as a tool to assess functional impairment in ME/CFS patients. This study aimed to estimate the potential of the CPET.

Methods:

We reviewed studies of the two-day CPET and meta-analyzed the differences between ME/CFS patients and controls regarding four parameters: volume of oxygen consumption and level of workload at peak (VO2peak, Workloadpeak) and at ventilatory threshold (VO2@VT, Workload@VT).

Results:

The overall mean values of all parameters were lower on the 2nd day of the CPET than the 1st in ME/CFS patients, while it increased in the controls. From the meta-analysis, the difference between patients and controls was highly significant at Workload@VT (overall mean: −10.8 at Test 1 vs. −33.0 at Test 2, p < 0.05), which may reflect present the functional impairment associated with PEM.

Conclusions:

Our results show the potential of the two-day CPET to serve as an objective assessment of PEM in ME/CFS patients. Further clinical trials are required to validate this tool compared to other fatigue-inducing disorders, including depression, using well-designed large-scale studies.

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‘Tis the season – a poem by Carw

‘Tis the season –  a poem by Carw

 

Surprised, yet again, by Autumnal torpor,
and, in wondering what to do,
as is our pain,
I settle to observing rain,
and the consequent habits of snails,
and the number of blackbirds that take  to my lawn,
with their wet and muddy probing beaks.

A manifesto at least
would offer some certainty,
but in the absence of whence,
stuff happens,

I think I will give up thinking,
and accede to cycles,
there is just conceit in complications.
When hungry, I’ll eat,

and then check the rain
for humility and common sense.

Or I could  carp at the stars in the night,
are you listening, stars…
well pay attention…
you send me to sleep, do you hear?
Well might you hide behind that cloud.

Or, having recovered from that,
I could shout the dawn down
for waking me up.

I will not be buying
full spectrum daylight
in prescriptive Watts,
or in likelihood less,
Googling Amazon for darkness in June.

It’s so much better
to deliquesce.

Carw   Dec  2020

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In memoriam 2020

Gone, but not forgotten

 

As we approach 2021 we want to remember those we lost this year, including members of the ME community in Wales.

 

Helen Price

Helen was a long time member of the Carmarthenshire ME support group. She played an active role in spite of her illness. She was also a welcome contributor to the WAMES magazine, keen to share something helpful she had learnt with others. She died suddenly at home on 8th November and will be sorely missed by her husband, who also has ME, her adult children who live locally and many friends.

 

Sandra Ozolins    1966-2020

Sandra had severe ME for 20 years and associated chemical sensitivity for the last 10, which made it difficult for her to visit buildings to discuss her medical or social care needs. Even ambulances were a difficult environment for her and her health had been deteriorating for some time. She suffered a lot of misunderstanding and dismissal over the years from people whose job it was to help her. In spite of this she fought hard to explain severe ME to them. She contributed her experiences to the Hywel Dda ME stakeholder group, although it cost her a lot.

Her determination to improve care for people with ME went far beyond a desire to improve her own situation and she made sure that WAMES and a local disability access group were well informed, so we could share in her campaign. After the local hospital refused to make adjustments for her chemical intolerance so she could access care, her condition deteriorated further and she slipped away peacefully on 14th September.

Her death certificate gives her cause of death as ME, a fact that would have given her much satisfaction, after years of campaigning for recognition. She is survived by her husband in Carmarthenshire, and family in England.

Read Simon’s obituary

 

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Christmas greeting from WAMES 2020

Wishing you all a relaxed and enjoyable Christmas, with working phone lines and good broadband access, to make contact with family and friends possible!

 

 

Thank you for all the support you have given WAMES during a challenging year. The challenges will continue during 2021 but with each other’s support we can find a way through!

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WAMES holiday helpline hours 2020-21

WAMES helpline hours

 

The WAMES helpline is run by volunteers and will be closed for part of the festive period.

 

Support brickshelpline@wames.org.uk  0290 2051 5061

  • closed 1pm 24 – 29 December
  • closed 31 Dec – 10am 3 Jan 2021
  • normal hours 10am – 7pm

Due to the difficult year everybody has had the helpline will open for 1 hour a day between 29th December and 31st December between 2- 3pm, for any person with ME or their carer/family who is feeling lonely or overwhelmed and wants to talk to somebody who understands.

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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WAMES response to draft NICE ME/CFS guideline

WAMES response to draft NICE ME/CFS guideline

 

This week WAMES sent in our response to the ME/CFS guideline consultation. Thanks to all who sent us their comments on the guideline and to those who have shared their stories and experiences with us over the last few years. They were a big help in shaping our response.

There was much in the guideline to be pleased about and we are grateful to those on the guideline committee, and to those who supplied evidence to the committee. The guideline included annexes and was accompanied by 13 other documents, so there was a lot to read and absorb in the 6 week consultation period! Inevitably we will not have picked up all the issues that needed to be addressed, but hopefully, in combination with other patient groups’ responses, our comments will have represented people in Wales and will make a difference.

Here are some of the key strengths and weaknesses we found in the draft guideline:

Strengths

  • the description of ME/CFS is recognisable to people with the condition!
  • acknowledges the significant impact ME/CFS has on quality of life of families affected
  • describes the additional symptoms and experiences of severe ME/CFS and the adjustments needed to provide appropriate care
  • acknowledges that more than 1 member of a family can have ME/CFS (though this could be highlighted better)
  • makes many recommendations based on experience and consensus, when research evidence is unavailable
  • includes recommendations for key areas of research
  • acknowledges the widespread misunderstanding about the illness, and the prejudice, disbelief and stigmatisation many with ME/CFS have experienced
  • focuses on management of the condition and acknowledges there is no cure yet
  • acknowledges the potential harm of inflexible exercise therapy
  • recommends the ‘energy envelope’ approach to energy management (but doesn’t mention pacing!)
  • uses the term ‘Post-exertional symptom exacerbation’ (not post-exertional malaise) to illustrate the impact of activity on all symptoms
  • uses the term fatigability instead of tiredness and chronic fatigue (though we have questioned the spelling) which we believe is less likely to be viewed as everyday tiredness, though still doesn’t emphasis the degree of weakness people experience
  • recommends each person with ME/CFS is given help to develop a management plan
  • highlights the need for advice to be given to support people in employment and education
  • recommends each ME/CFS person has a named person to coordinate care and management plan
  • highlights the need to include sufficient appropriate physical movement in the management plan to avoid developing other serious health issues
  • acknowledges that some people with ME/CFS will need aids and adjustments (though more information should be given and clarification that it is not just the severely affected whose health would benefit
  • highlights the need to have a plan to manage flares and relapses (flares might be a new concept for many)
  • highlights the need for regular monitoring and reviews
  • highlights the need for training of health and social care professionals

Weaknesses

  • the reasons for the changes in definitions and treatment recommendations is not clarified, so the anti-biomedical bias of the BioPsychoSocial theory of ME/CFS is not made apparent
  • there is not enough guidance given to doctors to make a diagnosis, exclude other conditions and be made aware of common co-existing conditions
  • acknowledges the sensitivity of many people with ME/CFS to drugs, but gives no guidance on which might be helpful
  • no mention has been made of the links to the post viral experience
  • there is not enough additional information about ME/CFS in children and young people
  • it is not clear which of the legal documents mentioned are for England only. No Welsh legislation is included which could make implementation of some aspects of the guideline harder in Wales
  • talks about unrefreshing sleep, instead of the broader term of sleep disturbance, and the importance of not restricting the amount time spent sleeping, particularly in the early days, is not highlighted
  • the guidance on safeguarding is not clear enough to avoid all cases of inappropriate abuse investigations
  • acknowledges the need for social care which understands ME/CFS, but gives little guidance about how this can be achieved
  • the recommendation for a diagnosis to be given in primary care, then a referral to be made to a specialist team for a fuller assessment and management advice has a number of problems and would be particularly difficult to implement in Wales
  • no guidance is given about the inappropriateness of placing ME/CFS teams in mental health or pain services
  • the section on psychological support is unhelpful. Only CBT is mentioned and the version described aims to help people manage ME/CFS symptoms, not emotional distress and anxiety, which we do not believe is the role of the psychologist

You can read the draft guideline here

Read excerpts in this blog, starting with NICE says no to Graded Exercise Therapy!

The final guideline should be published in April 2021

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Potential causal factors of CFS/ME: a concise & systematic scoping review of factors researched

Potential causal factors of CFS/ME: a concise and systematic scoping review of factors researched, by  in Journal of Translional Medicine vol 18, no: 484 (2020) 14 December 2020

 

Review abstract:

Background
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is understood as a complex condition, likely triggered and sustained by an interplay of biological, psychological, and social factors. Little oversight exists of the field of causal research. This systematic scoping review explores potential causal factors of CFS/ME as researched by primary studies.

Methods
We searched eight databases for primary studies that examined potential causal factors of CFS/ME. Based on title/abstract review, two researchers independently sorted each study’s factors into nine main categories and 71 subordinate categories, using a system developed with input given during a 2018 ME conference, specialists and representatives from a ME patient advocacy group, and using BMJ Best Practice’s description of CFS/ME etiology. We also extracted data related to study design, size, diagnostic criteria and comparison groups.

Results
We included 1161 primary studies published between January 1979 and June 2019. Based on title/abstract analysis, no single causal factor dominated in these studies, and studies reported a mean of 2.73 factors. The four most common factors were: immunological (297 studies), psychological (243), infections (198), and neuroendocrinal (198). The most frequent study designs were case–control studies (894 studies) comparing CFS/ME patients with healthy participants. More than half of the studies (that reported study size in the title/abstract) included 100 or fewer participants.

Conclusion
The field of causal hypotheses of CFS/ME is diverse, and we found that the studies examined all the main categories of possible factors that we had defined a priori. Most studies were not designed to adequately explore causality, rather to establish hypotheses. We need larger studies with stronger study designs to gain better knowledge of causal factors of CFS/ME.

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Informatics inference of exercise-induced modulation of brain pathways based on cerebrospinal fluid micro-RNAs in ME/CFS

Informatics inference of exercise-induced modulation of brain pathways based on cerebrospinal fluid Micro-RNAs in ME/CFS, by Vaishnavi Narayan, Narayan Shivapurkar and James N. Baraniuk in Netw Syst Med. 2020; 3(1): 142–158;  November 2020 [doi: 10.1089/nsm.2019.0009]

 

Research abstract:

Introduction:

The post-exertional malaise of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was modeled by comparing micro-RNA (miRNA) in cerebrospinal fluid from subjects who had no exercise versus submaximal exercise.

Materials and Methods:

Differentially expressed miRNAs were examined by informatics methods to predict potential targets and regulatory pathways affected by exercise.

Results: 

miR-608, miR-328, miR-200a-5p, miR-93-3p, and miR-92a-3p had higher levels in subjects who rested overnight (nonexercise n=45) compared to subjects who had exercised before their lumbar punctures (n=15). The combination was examined in DIANA MiRpath v3.0, TarBase, Cytoscape, and Ingenuity software® to select the intersection of target mRNAs. DIANA found 33 targets that may be elevated after exercise, including TGFBR1, IGFR1, and CDC42. Adhesion and adherens junctions were the most frequent pathways. Ingenuity selected seven targets that had complementary mechanistic pathways involving GNAQ, ADCY3, RAP1B, and PIK3R3. Potential target cells expressing high levels of these genes included choroid plexus, neurons, and microglia.

Conclusion: 

The reduction of this combination of miRNAs in cerebrospinal fluid after exercise suggested upregulation of phosphoinositol signaling pathways and altered adhesion during the post-exertional malaise of ME/CFS.

Clinical Trial Registration Nos.: NCT01291758 and NCT00810225.

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