Millions missing – what’s your empty shoes story?

ME Action blog post, by Fleur Eliza: Empty shoes

mm-empty-shoes

A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home: for instance, about birds or cats visiting our garden (preferably not at the same time), books, music, or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?

And that is exactly the point of the campaign #MillionsMissing. A pair of empty shoes is a metaphor for all the things people with Myalgic Encephalomyelitis (M.E.) are missing… missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease.

On Wednesday, May 25, ME/CFS patients, caregivers and advocates in twelve locations around the world gathered for a global day of action to demand research, treatment and an end to the stigma of ME.

And on September 27, it is time for round two for this campaign to get even more attention. Shoes from people with M.E. will fill the pavement as a silent protest.

The empty shoes are, I think, a brilliant symbol of the freedom we lack. It makes me think about the things I miss out on, and those are – to be honest – things I don’t want to think about too often. Missing out on having a job, doing my own grocery shopping, interacting with people, having dinner with my partner, visiting a museum or art centre, is challenging. I think about all those places my shoes and I went. What I’m missing is that freedom that I had once, a decade ago.

On September 27, in the Netherlands, the #MillionsMissing campaign will be located in The Hague, the political centre of my country. I can only hope that a high profile politician — a billionaire would be nice as well! — is touched by this gesture and understands the need for research. Someone who is willing to make an effort and, through this campaign and my empty shoes, appreciate their own shoes, appreciate their shoes for not being empty, and appreciate their own freedom.

Share your ’empty shoes’ story with us and further afield to draw attention to the Millions Missing due to ME.

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Treatment of insomnia reduces fatigue in CFS

Research abstract:

Background: Effectiveness of cognitive behavioural therapy for insomnia (CBT-I) has not been explored in Chronic Fatigue Syndrome (CFS), a condition where disturbed sleep is a principal symptom. This study aimed to report feasibility, acceptability and initial effectiveness of CBT-I in CFS.

Methods: Sixteen individuals with CFS received face-to-face CBT-I. Treatment comprised six sessions of sleep education, hygiene, restriction, stimulus control and cognitive therapy and completion of daily sleep diaries with an overarching aim to establish regularity in sleep-wake patterns. Patients completed self-report questionnaires (fatigue, pain, mood, sleep preoccupation, insomnia severity, and dysfunctional beliefs about sleep) pre- and post-treatment.

Results: Of the seven who completed the intervention five improved on self-reported sleep parameters (diary measures of sleep onset latency, awakenings during the night) following treatment. However, CBT-I was not acceptable for all (56%). Total fatigue (Chalder Fatigue), dropped from mean 22 to 16. Those not able to complete the intervention had higher fatigue, pain, depression and anxiety and reported more severe insomnia at baseline compared to completers.

Conclusion: CBT-I is an acceptable non-pharmacological approach with potential to treat sleep disturbances in some CFS patients. Strategies to reduce attrition and increase adherence are necessary, possibly telephone or online sessions, for this group.

Treatment of insomnia reduces fatigue in chronic fatigue syndrome in those able to comply with the intervention , by Zoe Gotts, Vincent Deary, Julia L. Newton, Jason Ellis in Fatigue: Biomedicine, Health & Behavior, Published online: 07 Sep 2016

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Song by Naomi Flanagan about the Millions Missing

Naomi Flanagan’s song was written in support of the #MillionsMissing protests that are happening globally in 2016 to demand more awareness of and research funding for the condition ME/CFS.

Jenny was a painter  [4 mins]

Jenny was a painter
Her canvases described
Flowers found in nature
Defying odds just to survive

And she loved how they would blossom
In the harshest of terrain
Mesmerising colours in the face of snow and rain.

But the things that shine the brightest are the ones that are cut down
Her body just as fragile as the orchids that she found
No shelter could be summoned from the ones who don’t believe
They chipped away at her dignity

There are millions that are missing
Are millions who are chained
And they’ve never stopped believing
That their lives can be reclaimed
They have trained to be survivors
They walk a path of stone
Worn out and alone

She rallies from her bedroom
She’s a warrior online
She’s not fighting for herself but for her sister Caroline

She had fallen so much younger,
Yet to taste the fruits of life
Now she’s lost her voice
To take the mantle in this fight

There are children that she wanted
There’s a job she’ll never do
And sadder yet is that she’s been forgotten but for a few

The ones who have the power they just wouldn’t change their minds
Abandoned on the sidelines

There are millions that are missing
Are millions who are chained
And they’ve never stopped believing
that their lives can be reclaimed
But they can’t be left to flounder
This truth won’t be outrun
There’s work here to be done

Oh this life can be so frail
Those words til now have failed us
What’ll you do

There are millions that are missing
Are millions who are chained
There’s a growing sense of urgency
That something must be changed
If we face this thing together
Put our bodies on the line,
If not now, when’s the time.

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Millions missing – add yourself to the global disease map

The group ME Advocacy is asking everyone with ME to place themselves onto www.diseasemaps.org under “Chronic Fatigue Syndrome/M.E.”.  This will help the “Millions missing” with this “Forgotten Plague” to be more visible, and will help people find others in their area for support, ideas and lobbying/legislation.  [You can be anonymous if you prefer.]

20227100 - map with a pin isolated on white2600 people are now listed on diseasemaps.org. WAMES is also there under organizations. Researcher, clinics or expert advisors can also add themselves.

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The association between borderline personality disorder, FM & CFS: systematic review

Review abstract:

Background:

Overlap of aetiological factors and demographic characteristics with clinical observations of comorbidity has been documented in fibromyalgia syndrome, chronic fatigue syndrome (CFS) and borderline personality disorder (BPD).

Aims:

The purpose of this study was to assess the association of BPD with fibromyalgia syndrome and CFS. The authors reviewed literature on the prevalence of BPD in patients with fibromyalgia or CFS and vice versa.

Methods:

A search of five databases yielded six eligible studies. A hand search and contact with experts yielded two additional studies. We extracted information pertaining to study setting and design, demographic information, diagnostic criteria and prevalence.

Results:

We did not identify any studies that specifically assessed the prevalence of fibromyalgia or CFS in patients with BPD. Three studies assessed the prevalence of BPD in fibromyalgia patients and reported prevalence of 1.0, 5.25 and 16.7%. Five studies assessed BPD in CFS patients and reported prevalence of 3.03, 1.8, 2.0, 6.5 and 17%.

Conclusions:

More research is required to clarify possible associations between BPD, fibromyalgia and CFS.

The association between borderline personality disorder, fibromyalgia and chronic fatigue syndrome: systematic review, by Sarah Penfold, Emily St. Denis, Mir Nadeem Mazhar in British Journal of Psychiatry Open Vol 2, no.4, pp 275-279, July/September 2016 [Accepted 3 Aug 2016]

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Global protest 27 Sep 2016 for the ‘Millions missing’ due to ME

There are #MillionsMissing from their lives because of Myalgic Encephalomyelitis (ME), a debilitating neuroimmune disease.

In May 2016 there were peaceful protests in 13 cities including Belfast. On September 27th, the #MillionsMissing will once again protest around the world, including Cardiff and Bristol.

Lets get louder

Join the millions missing round 2

Millions missing website

 

 

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Post-exercise muscle fatigue, oxidative stress & CD26 expression correlate to impaired quality of life in ME/CFS

Research abstract:

Background:

Myalgic encephalomyelitis chronic fatigue syndrome (ME/CFS) is a common debilitating disorder associated with an intense fatigue, a reduced physical activity, and an impaired quality of life. There are no established biological markerof the syndrome. The etiology is unknown and its pathogenesis appears to be multifactorial. Various stressors, including intense physical activity, severe infection, and emotional stress are reported in the medical history of ME/CFS patients which raises the question whether any physiological and biological abnormalities usually found in these patients could be indicative of the etiology and/or the quality-of-life impairment.

Methods:

Thirty-six patients and 11 age-matched healthy controls were recruited. The following variables that appear to address common symptoms of ME/CFS were studied here: (1) muscle fatigue during exercise has been investigated by monitoring the compound muscle action potential (M-wave); (2) the excessive oxidative stress response to exercise was measured via two plasma markers (thiobarbituric acid reactive substances: TBARS; reduced ascorbic-acid: RAA); (3) a potential inflammatory component was addressed via expression of CD26 on peripheral blood mononuclear cells; (4) quality-of-life impairment was assessed using the London Handicap Scale (LHS) and the Medical Outcome Study Short Form-36 (SF-36). The medical history of each patient, including the presence of stressors such as intense sports practice, severe acute infection and/or severe emotional stress was documented.

Results:

We observed that: (1) there were striking differences between cases and controls with regard to three biological variables: post-exercise M-wave, TBARS variations and CD26-expression at rest; (2) each of these three variables correlated with the other two; (3) abnormalities in the biomarkers associated with health-related quality of life: the LHS score was negatively correlated with the exercise-induced TBARS increase and positively correlated with CD26-expression while the pain component of SF-36 was negatively correlated with CD26-expression; (4) the TBARS increase and the M-wave decrease were the highest, and the CD26-expression level the lowest in patients who had been submitted to infectious stressors.

Conclusion:

In ME/CFS patients, severe alterations of the muscle excitability, the redox status, as well as the CD26-expression level are correlated with a marked impairment of the quality-of-life. They are particularly significant when infectious stressors are reported in the medical history.

Association of biomarkers with health-related quality of life and history of stressors in myalgic encephalomyelitis/chronic fatigue syndrome patients, by Emmanuel Fenouillet, Aude Vigouroux, Jean Guillaume Steinberg, Alexandre Chagvardieff, Frédérique Retornaz, Regis Guieu and Yves Jammes in Journal of Translational Medicine 201614:251 [Published: 31 August 2016]

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Metabolomic study finds amino acid deprivation impacts pain in ME/CFS

ME Australia blog post: Metabolomic study finds amino acid deprivation impacts pain, by Sasha Nimmo, 1 September 2016

A team of Australian scientists looked at biochemistry changes connected with pain and kidney function, identifying the biological basis of the development of widespread pain (July 2016).

The paper’s leading author is Dr Neil McGregor from the University of Melbourne, who was profiled in ‘Meet the Scientists’.

Dr McGregor explained that people with widepread pain lose amino acids through their kidney every time there is an increased inflammatory response and the frequent repetitive inflammatory response results in them gradually becoming depleted in amino acids.

“Widespread pain appears to be a consequence of the repeated inflammatory driven changes in renal concentrating activity leading to essential amino acid depletion.”

Widespread pain and renal function in MECFS‘ is McGregor, Armstrong and Butt’s third paper on metabolomics (noting that other scientists also worked on the papers), published in the July 2016 edition of Fatigue: Biomedicine, Health & Behavior.  Here is a summary of their paper ‘Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue syndrome patients’.

46 patients meeting the Canadian Consensus criteria (MECFS) were compared with 26 age and sex-matched healthy individuals.  They completed questionnaires and underwent a clinical examination, standard serum biochemistry, glucose tolerance tests and serum and urine metabolomes in an observational study.

Interestingly, the paper says this study was designed to “investigate metabolic changes in MECFS subjects using a discovery hypothesis and not a specific hypothesis driven method to assess specific biochemical events”.

The research found food intolerance, including cases of gluten intolerance, were associated with widespread pain.

The paper said “possibly also involved would be insulin resistance mediated amino acid uptake as evidenced by the association with increasing blood glucose. The MECFS patients do have an anomaly in insulin excretion in this study (Data to be published separately) which supports this conclusion.”

“Results: Increases in pain distribution were associated with reductions in serum essential amino acids, urea, serum sodium and increases in serum glucose and the 24-hour urine volume however the biochemistry was different for each pain area. Regression modelling revealed potential acetylation and methylation defects in the pain subjects.”

Dr McGregor said it was important to be able to reproduce findings to validate them and also gain greater insight into the issues.

“This study has confirmed and extended the findings of our previous studies showing an association between altered amino acid excretion, urine volume, serum sodium, osmolality and increases in facial and widespread pain expression in MECFS patients.”

The team have upcoming papers to be published which address the underlying biological issues involved in the process of post exertional fatigue/malaise and its potential relationship to the exercise process. Read more in Dr McGregor’s ‘Meet the Scientist’.

Also just released is the Open Medicine’s ‘Metabolic features of chronic fatigue syndrome‘ in which researchers claim to have discovered a metabolic signature.

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A subset of ME/CFS patients have IBS

Research abstract:

BACKGROUND:
There is evidence that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is accompanied by gastro-intestinal symptoms; and IgA and IgM responses directed against lipopolysaccharides (LPS) of commensal bacteria, indicating bacterial translocation.

METHODS:
This study was carried out to examine gastro-intestinal symptoms in subjects with ME/CFS versus those with chronic fatigue (CF). The two groups were dissected by dichotomizing those fulfilling and not fulfilling Fukuda’s critera. In these groups, we examined the association between gastro-intestinal symptoms and the IgA and IgM responses directed against commensal bacteria.

RESULTS:
Using cluster analysis performed on gastro-intestinal symptoms we delineated that the cluster analysis-generated diagnosis of abdominal discomfort syndrome (ADS) was significantly higher in subjects with ME/CFS (59.6%) than in those with CF (17.7%). The diagnosis of ADS was strongly associated with the diagnosis of irritable bowel syndrome (IBS). There is evidence that ME/CFS consists of two subgroups, i.e. ME/CFS with and without ADS. Factor analysis showed four factors, i.e. 1) inflammation-hyperalgesia; 2) fatigue-malaise; 3) gastro-intestinal symptoms/ADS; and 4) neurocognitive symptoms. The IgA and IgM responses to LPS of commensal bacteria were significantly higher in ME/CFS patients with ADS than in those without ADS.

CONCLUSIONS:
The findings show that ADS is a characteristic of a subset of patients with ME/CFS and that increased bacterial translocation (leaky gut) is associated with ADS symptoms. This study has defined a pathway phenotype, i.e bacterial translocation, that is related to ME/CFS and ADS/IBS and that may drive systemic inflammatory processes.

Evidence for the existence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with and without abdominal discomfort (irritable bowel) syndrome. by M
Maes, J Leunis, M Geffard, M Berk in Neuro Endocrinol Lett. 2014;35(6):445-53

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Naviaux’s ME/CFS ground-breaking metabolomics results says Prof Davis

Open Medicine Foundation blog post, by Prof Ron Davis, 30 August 2016: ME/CFS ground-breaking metabolomics results by Naviaux RK, et al

The publication, “Metabolic Features of Chronic Fatigue Syndrome” by Naviaux RK, et al. is a landmark in ME/CFS research. It is the most important and groundbreaking study of ME/CFS to date.

Extending recent indications of metabolic alterations in ME/CFS, this study provides the first comprehensive, quantitative demonstration of the metabolomic deficiencies that characterize the disease. They define a clear metabolic ‘signature’ that accurately distinguishes patients from healthy individuals. This signature was consistent even among patients with different symptoms or disease-initiating events. These findings are exciting news for both patients and researchers.

Not only do they substantiate the biological reality of this stigmatized disease, but they also point to the most promising ME/CFS biomarker candidate the field has seen. An ME/CFS biomarker – long awaited by scientists – would allow the precise and objective diagnostics that have never been possible for this disease. In addition, it would accelerate the search for treatments. Dr. Naviaux’s study suggests that both of these endeavors could be designed in a way that will benefit all patients, regardless of their symptoms and initiating events (which are not always known).

In addition to a common metabolomic response, patients show a variety of individual responses. These individual responses may contribute to the symptomatic differences, and may be caused in part by genetic differences. Similarly, effectively treating ME/CFS might require two components: a common treatment for all patients and a personalized treatment. Interestingly, this might explain the plethora of treatments that have helped individual patients but only rarely work on other patients.

Another important finding from this study is that the metabolomic response observed in ME/CFS is opposite to the pattern seen in acute infection and metabolic syndrome. This result supports the controversial idea that while infection is often the initiating event for ME/CFS, it does not contribute to the ongoing illness. What is important to note is that in the absence of evidence of an active infection, it is plausible that the long-term antimicrobial treatments often used for ME/CFS patients are doing more harm than good.

This breakthrough study thus presents several new findings of great importance to the ME/CFS patient, medical, and research communities – and perhaps most importantly, to the search for treatments. For these findings to have an impact on patient care, further investigation and validation via independent studies are crucial.

Because of this, the Open Medicine Foundation has funded the next study of a larger patient cohort, in which Dr. Naviaux will validate the ME/CFS metabolomic signature in a larger, geographically diverse sample, and I will explore the role of genetics in the individual responses. These studies are already underway.

We appointed Dr. Naviaux to the Scientific Advisory Board of OMF earlier this year, and we are grateful for his expertise in helping to unravel the metabolic mysteries of this debilitating disease. We are finally on the right path to understanding ME/CFS. We and many of our collaborators are working hard to translate this new understanding into general and personalized treatments. The more support our research gets, the faster that will happen. Find out how you can support ME/CFS research here.

RobertKNaviaux

Read more about Dr Naviaux’s work: Metabolic Features of Chronic Fatigue Syndrome – Q & A with Robert Naviaux, MD  30 August 2016

 

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