Severe ME Day August 8th 2022 – Brain Fog
Severe ME Day 2022
Every year we take time on August 8th to remember everyone who is suffering from, or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.
This year we join with people around the world to highlight ‘brain fog’, a problem all people with ME can experience, but which is particularly disabling for those who are severely affected.
Brain fog – a type of cognitive impairment – manifests as impaired working memory and concentration accompanied by difficulty processing complex information. [ME pedia]
“Whatever you call it, I just feel stupid. Why can’t I remember how to brush my teeth? Why can’t I explain to my carers how I feel? Why have I forgotten what you have said, 2 minutes after you speak? In the fog I just have to hold on to hope, as I wait for more lucid moments.” (Mary)
Severe ME – key points
Around 25% of people with ME are almost completely housebound or bedbound.- What is severe ME?
- Severe ME Awareness Day was started by 25% Group in 2013
- 8th August is Sophia Mirza‘s birthdate, an English woman who died of ME age 32
- Severe ME can lead to early death
- Being housebound and severely ill has led to many reporting experiencing abuse or neglect
- Severe ME Support & activity groups: 25% Group; Hummingbirds Foundation; Severe ME Art Project; Pillow writers
- ME care resources
- Understanding and coping with brain fog: Very well health; CFS self help
Around 25% of people with ME are almost completely housebound or bedbound.
Posted in News
Tagged brain fog, severe me day
Comments Off on Severe ME Day August 8th 2022 – Brain Fog
Sign up for regular news from WAMES
WAMES e-news
Sign up for the latest news from WAMES, straight to your inbox. Read about:
- the activities of WAMES
- what is happening in Wales of interest to people with ME & chronic illness
- ways to get involved and influence ME research, health & social care in Wales, welfare reform, disability issues, carers issues etc.
You can also continue to read about key news from around the world on our blog and social media.
E-news sign up Read past e-news
Posted in News
Comments Off on Sign up for regular news from WAMES
WAMES & the WMEA warn against the Lightning Process
The Lightning Process: A Position Paper from the World ME Alliance
The World ME Alliance and its members do not endorse the Lightning Process for people with Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS).
The World ME Alliance (WMEA) has taken the unusual step of publishing a position paper on the Lightning Process (LP), which is a psychological training programme created by Phil Parker and that has been promoted to ME and CFS patients as a cure. It gets its name because it is supposed to cure in 3 days.
WAMES is a founding member of the Alliance and has signed up to the statement in support of members in countries where the Lightning Process is currently being vigorously promoted. In the UK in 2012 the British Standards Authority ruled that Phil Parker Ltd was advertising the LP as a cure for ME without evidence. LP’s influence in the UK continues, but without the impetus prior to 2012.
The short Statement makes the following points about LP:
- there is no evidence to support its claims
- it encourages participants to be secretive about the process
- it ignores PEM so can cause harm to patients
- there is little follow-up by practitioners
- it is costly and can leave participants in financial difficulty
- there is a void in alternative treatment options
People with ME deserve evidence-based healthcare and research into the causes and treatment of their disease.
Posted in News
Tagged Lightning process, WMEA, World ME Alliance
Comments Off on WAMES & the WMEA warn against the Lightning Process
Research: Epstein-Barr Virus in ME/CFS
Revisiting IgG antibody reactivity to Epstein-Barr Virus in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and its potential application to disease diagnosis
Key research findings:
- Epstein-Barr virus (EBV) infection is commonly reported at the onset of ME/CFS, but could antibodies against EBV serve as biomarkers of the disease?
- No differences in antibody responses were found between blood samples from 92 ME/CFS patients and 50 healthy control subjects.
- However, when analysing only patients with a reported infectious onset of disease, antibody responses against two EBV-related antigens were stronger in the patient group; these results need confirmation.
Research abstract:
Infections by the Epstein-Barr virus (EBV) are often at the disease onset of patients suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). However, serological analyses of these infections remain inconclusive when comparing patients with healthy controls (HCs). In particular, it is unclear if certain EBV-derived antigens eliciting antibody responses have a biomarker potential for disease diagnosis.
With this purpose, we re-analyzed a previously published microarray data on the IgG antibody responses against 3,054 EBV-related antigens in 92 patients with ME/CFS and 50 HCs. This re-analysis consisted of constructing different regression models for binary outcomes with the ability to classify patients and HCs. In these models, we tested for a possible interaction of different antibodies with age and gender. When analyzing the whole data set, there were no antibody responses that could distinguish patients from healthy controls.
A similar finding was obtained when comparing patients with non-infectious or unknown disease trigger with healthy controls. However, when data analysis was restricted to the comparison between HCs and patients with a putative infection at their disease onset, we could identify stronger antibody responses against two candidate antigens (EBNA4_0529 and EBNA6_0070).
Using antibody responses to these two antigens together with age and gender, the final classification model had an estimated sensitivity and specificity of 0.833 and 0.720, respectively. This reliable case-control discrimination suggested the use of the antibody levels related to these candidate viral epitopes as biomarkers for disease diagnosis in this subgroup of patients.
To confirm this finding, a follow-up study will be conducted in a separate cohort of patients.
Research authors & location:
Nuno Sepúlveda, João Malato, Franziska Sotzny, Anna D Grabowska, André Fonseca, Clara Cordeiro, Luís Graça, Przemyslaw Biecek, Uta Behrends, Josef Mautner, Francisco Westermeier, Eliana M Lacerda, Carmen Scheibenbogen in Front Med (Lausanne). 2022 Jun 24;9:921101 [doi: 10.3389/fmed.2022.921101] eCollection 2022.
ME Research UK: Revisiting IgG antibody reactivity to EBV in ME/CFS and its potential application to disease diagnosis (meresearch.org.uk)
Posted in News
Tagged André Fonseca, Anna D Grabowska, Carmen Scheibenbogen, Clara Cordeiro, Dr Francisco Westermeier, Eliana M Lacerda, Epstein Barr virus, Franziska Sotzny, João Malato, Josef Mautner, Luís Graça, Nuno Sepulveda, Przemyslaw Biecek, Uta Behrends
Comments Off on Research: Epstein-Barr Virus in ME/CFS
Report says neuro services are at crisis point in Wales
My Neuro survey Wales report 2022 from the WNA
Whilst we are cognisant that the pandemic has brought with it unprecedented demand on all health and social services, two years hence, the situation for people living with neurological conditions in Wales is now at crisis point and they feel abandoned [WNA]
8,510 people living with or affected by neurological conditions across the UK completed the My Neuro Survey, 503 from Wales. Results are now available in the Wales Neurological Alliance (WNA) report: My Neuro Survey Wales.
People living with neurological conditions in Wales continue to report substantial barriers to accessing the treatment, services and support that they need from health and social care services. [WNA]
Survey aim?
To understand the demand for and impact of services for people living with neurological
conditions in Wales
Who?
Of those who completed the questionnaire, 93% (n=462) lived with a neurological
condition; 7% were carers, friends or family members of a person with a neurological
condition.
The most reported conditions were:
- Multiple sclerosis 23.1%
- Other 22.3% (includes people with ME)]
- Dystonia 10.7%
- Epilepsy 9.1%
- Migraine 7.6%
- Parkinson’s 7.6%
- Myasthenia 7.6%
- Huntington’s 4.4%
Results
There were several themes emerging from the My Neuro Survey, these include:
The Wales Neurological Alliance’s response:
Urgent action is now required by those who plan, commission and deliver our services to address the shortcomings and ensure that people living with neurological conditions are not left behind in the post COVID recovery planning.
Download the report in Welsh and English
What next?
WAMES, as part of the WNA, are backing the:
1 in 6 people in the UK live with a neurological condition, but there simply isn’t the workforce or services in place to support them.
From delays to lifechanging treatment and care, to a lack of mental health support, we need Governments across the UK to back the 1 in 6, and set up a Neuro Taskforce to deliver real change. Sign our petition today!
WAMES (and the WNA) are also in discussions with the Welsh Government Neuro / ME lead, exploring ways to help Health Boards improve healthcare for people with ME and #ImplementNICEmecfs. You can help by sharing with us your recent experiences of health and social care so we are up to date with any changes that are (or are not) bring made.
Posted in News
Tagged #Backthe1in6, #ImplementNICEmecfs, My Neuro Survey, Wales neurological alliance
1 Comment
Research: The depressing truth about depression scales for people with chronic invisible illness
The depressing truth about depression scales for people with chronic invisible illness, by CL Pederson, BM Wagner
Research conclusions:
People with chronic invisible illnesses like POTS, CFS/ME, EDS, MCAS, and fibromyalgia have numerous and often severe somatic symptoms related to their illness that may over-inflate their depression scores on many common screening instruments. This leads to the possible over-diagnosis of depression in this community, further hindering individuals with chronic invisible illness when seeking treatment.
Research abstract
Background
Depression screening instruments are commonly used in research and the clinic.
Aim:
This study seeks to determine whether several common depression scales might be contaminated by somatic symptoms, thus overestimating depression in people with chronic invisible illness.
Method:
685 chronically ill women with postural orthostatic tachycardia syndrome, chronic fatigue syndrome/myalgic encephalomyelitis, mast cell activation syndrome, Ehlers-Danlos syndrome and/or fibromyalgia took the Beck Depression Inventory-II (BDI-II). For a broader look at major self-report scales that assess depression in adults, we also investigated seven additional instruments listed on the American Psychological Association webpage.
Results:
In this sample, 38.5% appeared to have major depression as measured by the BDI-II, but this number decreased to 8% when somatic symptoms were removed. Further, there was a 31.2% increase in the number of participants in the minimal depression category of the BDI-II-Mood.
Finally, 75% of the adult depression scales that we assessed had at least 40% of the score related to somatic symptoms.
Conclusion:
Care must be taken when assessing depression in people with chronic invisible illnesses to prevent artificial over-inflation of scores based on somatic complaints.
Study location:
Journal of Health Science & Education Vol 6, #1, p 223, July 11, 2022
Posted in News
Tagged BM Wagner, Chronic illness, CL Pedersen, depression, EDS, Ehlers-Danlos syndrome, Fibromyalgia, FM, invisible illness, Mast Cell Activation Syndrome, MCAS, postural orthostatic tachycardia syndrome, POTS, somatic symptoms
Comments Off on Research: The depressing truth about depression scales for people with chronic invisible illness
Research: Metabolomic evidence for peroxisomal dysfunction in ME/CFS
Metabolomic evidence for peroxisomal dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Research conclusion:
Our findings provide the first metabolomic evidence of peroxisomal dysfunction, and are consistent with dysregulation of lipid remodeling and the tricarboxylic acid cycle. These findings, if validated in other cohorts, could provide new insights into the pathogenesis of ME/CFS and highlight the potential use of the plasma metabolome as a source of biomarkers for the disease.
Peroxisomes are small structures (organelles) inside a cell that perform specific functions to keep that cell alive. Mitochondria is an organelle which makes energy. Peroxisome regulates biochemical pathways that involve oxidation. (Study.com)
Research abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic and debilitating disease characterized by unexplained physical fatigue, cognitive and sensory dysfunction, sleeping disturbances, orthostatic intolerance, and gastrointestinal problems.
Persoxisome
People with ME/CFS often report a prodrome consistent with infections. Using regression, Bayesian and enrichment analyses, we conducted targeted and untargeted metabolomic analysis of plasma from 106 ME/CFS cases and 91 frequency-matched healthy controls.
Subjects in the ME/CFS group had significantly decreased levels of plasmalogens and phospholipid ethers (p<0.001), phosphatidylcholines (p<0.001) and sphingomyelins (p<0.001), and elevated levels of dicarboxylic acids (p=0.013). Using machine learning algorithms, we were able to differentiate ME/CFS or subgroups of ME/CFS from controls with area under the receiver operating characteristic curve (AUC) values up to 0.873.
Metabolomics is the screening for characteristic substances in body fluids and tissue, which serve as direct marker of biochemical activity
Comment:
Peroxisomes, Mitochondria, & Fibrinoid Microclots, by John Duncan
Authors:
Xiaoyu Che, Christopher R Brydges, Yuanzhi Yu, Adam Price, Shreyas Joshi, Ayan Roy, Bohyun Lee, Dinesh K Barupal, Aaron Cheng, Dana March Palmer, Susan Levine, Daniel L Peterson, Suzanne D Vernon, Lucinda Bateman, Mady Hornig, Jose G Montoya, Anthony L Komaroff, Oliver Fiehn, W Ian Lipkin
Article location:
International Journal of Molecular Sciences Vol 23, #14, p 7906, July 18, 2022
Posted in News
Tagged Aaron Cheng, Adam Price, Ayan Roy, biomarker, Bohyun Lee, Christopher R Brydges, cytidine-5′-diphosphocholine pathway, Dana March Palmer, Dinesh K Barupal, Dr Daniel Peterson, Dr Ian Lipkin, Dr Lucinda bateman, Dr Susan Levine, Dr Suzanne Vernon, metabolomics, peroxisome, Prof Anthony Komaroff, Prof Jose Montoya, Prof Oliver Fiehn, Shreyas Joshi, tricarboxylic acid cycle, Yuanzhi Yu
Comments Off on Research: Metabolomic evidence for peroxisomal dysfunction in ME/CFS
Diagnostic test research: Orthostatic challenge causes the same responses in Long COVID & ME/CFS
Orthostatic challenge causes distinctive symptomatic, hemodynamic and cognitive responses in Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,
by Suzanne D Vernon, Sherlyn Funk, Lucinda Bateman, Gregory J Stoddard, Sarah Hammer, Karen Sullivan, Jennifer Bell, Saeed Abbaszadeh, W Ian Lipkin, Anthony L Komaroff in Front Med (Lausanne). 23 Jun 2022 [doi: 10.3389/fmed.2022.917019]
Research abstract conclusions:
A test of orthostatic stress easily performed in an office setting reveals different symptomatic, hemodynamic and cognitive abnormalities in people with Long COVID and ME/CFS, compared to healthy control subjects.
Thus, an orthostatic challenge easily performed in an office setting, and the use of a smart phone app to assess cognition, can provide objective confirmation of the orthostatic intolerance and brain fog reported by patients with Long COVID and ME/CFS.
Background:
Some patients with acute COVID-19 are left with persistent, debilitating fatigue, cognitive impairment (“brain fog”), orthostatic intolerance (OI) and other symptoms (“Long COVID”). Many of the symptoms are like those of other post-infectious fatigue syndromes and may meet criteria for myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Common diagnostic laboratory tests are often unrevealing.
Methods:
We evaluated whether a simple, standardized, office-based test of OI, the 10-min NASA Lean Test (NLT), would aggravate symptoms and produce objective hemodynamic and cognitive abnormalities, the latter being evaluated by a simple smart phone-based app.
Participants:
People with Long COVID (N = 42), ME/CFS (N = 26) and healthy control subjects (N = 20) were studied just before, during, immediately after, 2 and 7 days following completion of the NLT.
Results:
The NLT provoked a worsening of symptoms in the two patient groups but not in healthy control subjects, and the severity of all symptoms was similar and significantly worse in the two patient groups than in the control subjects (p < 0.001). In the two patient groups, particularly those with Long COVID, the NLT provoked a marked and progressive narrowing in the pulse pressure. All three cognitive measures of reaction time worsened in the two patient groups immediately following the NLT, compared to the healthy control subjects, particularly in the Procedural Reaction Time (p < 0.01).
Lean test causes various measurable reactions in ME and long Covid patients
ME Research UK: Orthostatic Intolerance in ME/CFS and long COVID
Posted in News
Tagged Dr Lucinda bateman, Dr Suzanne Vernon, Gregory J Stoddard, Jennifer Bell, Karen Sullivan, Prof Anthony Komaroff, Prof Ian Lipkin, Saeed Abbaszadeh, Sarah Hammer, Sherlyn Funk
Comments Off on Diagnostic test research: Orthostatic challenge causes the same responses in Long COVID & ME/CFS
Research review: Molecular hydrogen as a medical gas for the treatment of ME/CFS
Molecular Hydrogen as a medical gas for the treatment of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: possible efficacy based on a literature review, by Shin-ichi Hirano, Yusuke Ichikawa, Bunpei Sato, Yoshiyasu Takefuji and Fumitake Satoh in Front. Neurol., 11 April 2022 [doi.org/10.3389/fneur.2022.841310]
Review article:
Conclusion:
Since H2 ameliorates mitochondrial dysfunction, we herein reviewed the literature for the anti-fatigue effects of H2 in animal studies and human clinical trials. The findings of the literature review suggested that H2 exerts anti-fatigue effects, and that these effects may involve not only the direct scavenging of mitochondria-generated ROS by H2, but also its antioxidant and anti-inflammatory effects through the regulation of gene expression.
Molecular hydrogen =H2 = dihydrogen = hydrogen gas
Since mitochondrial dysfunction is also involved in the etiology of ME/CFS, the literature review also suggested that the anti-fatigue effects of H2 in animal and human clinical studies indicate a possible ameliorative effect of H2 on ME/CFS. Since “long COVID” or “post COVID,” the “sequelae” of COVID-19, may be similar to ME/CFS, there is an urgent need to develop precise therapies and substances for ME/CFS. H2 gas may be an effective medical gas for the treatment of ME/CFS.
A possible mechanism by which H2 ameliorates mitochondrial dysfunction in ME/CFS patients.
Review abstract:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disorder that is characterized by fatigue that persists for more than 6 months, weakness, sleep disturbances, and cognitive dysfunction. There are multiple possible etiologies for ME/CFS, among which mitochondrial dysfunction plays a major role in abnormal energy metabolism.
The potential of many substances for the treatment of ME/CFS has been examined; however, satisfactory outcomes have not yet been achieved. The development of new substances for curative, not symptomatic, treatments is desired. Molecular hydrogen (H2) ameliorates mitochondrial dysfunction by scavenging hydroxyl radicals, the most potent oxidant among reactive oxygen species. Animal experiments and clinical trials reported that H2 exerted ameliorative effects on acute and chronic fatigue.
Therefore, we conducted a literature review on the mechanism by which H2 improves acute and chronic fatigue in animals and healthy people and showed that the attenuation of mitochondrial dysfunction by H2 may be involved in the ameliorative effects.
Although further clinical trials are needed to determine the efficacy and mechanism of H2 gas in ME/CFS, our literature review suggested that H2 gas may be an effective medical gas for the treatment of ME/CFS.
Posted in News
Tagged Bunpei Sato, chronic fatigue, Fumitake Satoh, H2, hydrogen gas, long Covid, mitochondrial dysfunction, molecular hydrogen, Shin-ichi Hirano, Yoshiyasu Takefuji, Yusuke Ichikawa
Comments Off on Research review: Molecular hydrogen as a medical gas for the treatment of ME/CFS
