Brain fog of post-COVID-19 condition and ME/CFS, same medical disorder?
Spanish researchers studied cognitive impairment in people with post-COVID syndrome and ME/CFS. They found similar symptoms and cognitive impairment in both groups, with greater physical and neuropsychiatric problems in ME/CFS. They also suggest a prolonged decreased sense of smell is a possible marker of cognitive deterioration in patients with post-COVID-19.
Research abstract:
Background:
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is characterized by persistent physical and mental fatigue.
The post-COVID-19 condition patients refer physical fatigue and cognitive impairment sequelae. Given the similarity between both conditions, could it be the same pathology with a different precipitating factor?
Objective:
To describe the cognitive impairment, neuropsychiatric symptoms, and general symptomatology in both groups, to find out if it is the same pathology. As well as verify if the affectation of smell is related to cognitive deterioration in patients with post-COVID-19 condition.
Methods:
The sample included 42 ME/CFS and 73 post-COVID-19 condition patients. Fatigue, sleep quality, anxiety and depressive symptoms, the frequency and severity of different symptoms, olfactory function and a wide range of cognitive domains were evaluated.
Results:
Both syndromes are characterized by excessive physical fatigue, sleep problems and myalgia. Sustained attention and processing speed were impaired in 83.3% and 52.4% of ME/CFS patients while in post-COVID-19 condition were impaired in 56.2% and 41.4% of patients, respectively.
Statistically significant differences were found in sustained attention and visuospatial ability, being the ME/CFS group who presented the worst performance.
Physical problems and mood issues were the main variables correlating with cognitive performance in post-COVID-19 patients, while in ME/CFS it was anxiety symptoms and physical fatigue.
Conclusions:
The symptomatology and cognitive patterns were similar in both groups, with greater impairment in ME/CFS. This disease is characterized by greater physical and neuropsychiatric problems compared to post-COVID-19 condition.
Likewise, we also propose the relevance of prolonged hyposmia as a possible marker of cognitive deterioration in patients with post-COVID-19.
Brain fog of post-COVID-19 condition and Chronic Fatigue Syndrome, same medical disorder?, by N Azcue, J C Gómez-Esteban, M Acera, B Tijero, T Fernandez, N Ayo-Mentxakatorre, T Pérez-Concha, A Murueta-Goyena, J V Lafuente, Á Prada, A López de Munain, G Ruiz-Irastorza, L Ribacoba, I Gabilondo, R Del Pino inJ Transl Med. 2022 Dec 6;20(1):569 [doi: 10.1186/s12967-022-03764-2]
WAMES has been asking Health Boards in Wales during 2022 how they are implementing the 2021 ME/CFS NICE guideline. Although progress is excruciatingly slow, there are signs that some are making changes.
Hywel Dda and Betsi Cadwaladr Health Boards
Both are planning how to launch a stakeholder engagement on their implementation plans in 2023.
Cardiff & Vale Health Board
CVUHB has been holding a long-term conditions co-production exercise during 2021 which WAMES and members of MESiG have been part of. The Health Board is now planning a Pathway Implementation group, with WAMES as a stakeholder during 2023.
SBUHB say they have updated their ME/CFS clinical pathway, have a training programme for GPs and include people with ME/CFS in rheumatology services. WAMES continues to try to get more details about this service and encourage some patient engagement.
PowysHealth Board
PtHB say they have updated their ME/CFS pathway. They consult existing service users about their plans, not those who have been disillusioned by their past use of graded exercise and CBT approaches). WAMES is continuing to try to find out more about the improvements they have made and how patients can be heard.
Welsh Government
During 2021 WAMES has been informing the ME/CFS lead (also the neuro and Long COVID lead) about the issues. She has been very interested and concerned. Hopefully 2023 will be the year of action!
Can you help?
In order to represent people with ME/CFS we need to hear about your recent experiences with the NHS in your area.
Is your GP aware of the revised NICE guideline?
Have you asked for a formal diagnosis?
Do staff appear to understand PEM – the post exertional symptom exacerbation response?
Do they know where to refer you within the Health Board?
Have you been offered any of the Long COVID support sessions?
WAMES is run by volunteers, many of whom have ME or care for us. We will be taking some time off over the festive period so we can start the new year refreshed (hopefully!).
Great news – the £400 milestone has been reached and we are half way to reaching our £800 fundraising target. A big thank you to someone who made us their Christmas gift this year!
The more we raise, the longer we can keep speaking out for the 3,600+ families hit by ME/CFS in Wales
£400 is a lot still to raise before bills start pouring in during March / April, but small donations from lots of people and free money from online shopping can help us stay afloat as long as we need to.
This call gives ME/CFS researchers improved opportunities to compete for a big European grant but no funding on ME/CFS has been ensured yet.
This article provides an overview of what has been decided by the Commission and which steps still need to be taken to get tangible results for ME/CFS patients…
The call has a total budget of €25 million. It aims to fund 4 projects that will receive 6 to 7 million euros each… If ME/CFS researchers could successfully submit a project, this call can give a significant boost to research on ME/CFS in Europe.
The funding amount, however, will likely be split among multiple collaborators. An application requires researchers from minimally 3 different EU countries and many European grants include even larger consortia. Researchers from the UK and the US can join in to become partners and receive funding under this call. Find out more
The EU’s initiative opens the door to increased funding for ME/CFS research but the monies on offer are not ring-fenced and so ME/CFS research applications will need to compete with diseases equally deserving of research.
There is no guarantee that ME/CFS research will be funded at all despite the calls of the EU Parliament in their Resolution. Progress has been made but outcomes are awaited.
Investigating undergraduate medical education on myalgic encephalomyelitis/ chronic fatigue syndrome
Cardiff University medical student Victoria Alice Reid & Dr Nina Muirhead surveyed 94 students from more than 16 medical schools across the UK. 35% of the students did not know what ME/CFS was and 88% said that the disease had not been covered in their course so far. 89% of participants wished to learn more about ME/CFS, specifically through e-learning and videos.
“ME/CFS is not just yet another disease to add to overburdened curricula, it is unique in that there is a worsening of repeat cardiovascular exercise physiology, and exacerbation of disease symptoms on exertion. Patients with ME/CFS are an exception because the usual advice to exercise could cause harm.”
Research abstract:
Background and Objectives:
ME/CFS is a poorly understood, highly stigmatised condition which significantly reduces patients’ quality of life. ME/CFS had been identified as a gap in many health professionals’ knowledge, therefore this research aims to explore the understanding of ME/CFS amongst UK medical students.
Methods:
An online survey developed using Redcap was distributed to participants who were recruited via social media or via medical societies’ emails. The participants were undergraduate UK medical students.
Results:
94 students completed the survey from more than 16 medical schools. 35% of the students did not know what ME/CFS is and 88% say that the disease has not been covered in their course so far. 89% of participants would like to learn more about ME/CFS, specifically through e-learning and videos.
Discussion:
Participants were generally unaware of ME/CFS and its symptoms and had not received relevant teaching or exposure to the disease. Education on ME/CFS within undergraduate UK medical schools is currently inadequate and the interest expressed by students in this survey demonstrates a new teaching opportunity for UK medical schools.
“The Covid pandemic raised awareness of Long Covid and ME/ CFS at the time of the survey, which may have made students more interested in participating.”
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#WAMES_800 Fundraising Journey climbs another step towards our goal
We have climbed another step towards reaching our target of £800 to fund next year’s WAMES activities.
The £300 milestone has been reached, but still £500 to go. We need to pick up the pace!
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The third milestone has been reached by the sale of hand-made cards and donations from online shopping. Each shop might raise anything from 25p for a weekly supermarket shop to £5+ a time on a big purchase, but it all adds up. Many thanks to all who have joined us on our fundraising journey. Why not invite others to join us!
A Physiological Society virtual meeting in February 2022 brought clinicians and researchers together to discuss the current understanding of long COVID mechanisms, risk factors and recovery. An international group of researchers have published a review of the themes arising from that meeting.
“It considers the nature of long COVID, exploring its links with other post-viral illnesses such as myalgic encephalomyelitis/ chronic fatigue syndrome, and highlights how long COVID research can help us better support those suffering from all post-viral syndromes.”
Extract: Links with ME/CFS
The increased incidence of symptoms after COVID-19 compared to influenza suggests some specificity for the type of infection. However, there are also some similarities between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Like long COVID, this is associated with prior viral infection and often occurs in previously healthy and active people (predominantly females) (Poenaru et al., 2021).
The chronic presentation of both conditions is similar, with fatigue, brain fog and post-exertional malaise (PEM) (Singh et al., 2022), impacting on activities of daily living.
One study demonstrated that in those symptomatic with long COVID at 2 months, 85% still reported symptoms after 1 year (Tran et al., 2022). Long COVID can have a significant impact on patients’ lives after 6 months, which may, in some cases, represent evolution to an ME/CFS-like condition.
Symptoms of Long COVID (Tacquet)
Life-altering fatigue is very common in both populations and also in patients with chronic autoimmune (Davies et al., 2021) or neurological (Kluger et al., 2013) diseases. In some, this fatigue becomes severely disabling (van Ruitenbeek et al., 2019).
Patients with ME/CFS need daily management of activity levels in order to prevent PEM, which when severe, can lead individuals to become bed-bound, with symptoms such as severe postural orthostatic intolerance (POTS), sleep dysfunction, myalgia, cognitive dysfunction, dysautonomia, neuro-immuno-endocrine dysfunction, hyperacusis and photophobia (Carruthers et al., 2011; Stussman et al., 2020).
Similar to long COVID, the lack of a diagnostic test is a significant hurdle, with many patients diagnosed by excluding other conditions, or given a diagnosis of ME/CFS after a prolonged period of time (>10 years). Between 80% and 90% of patients never get a clear diagnosis (Komaroff et al., 1996).
Current ME/CFS management options are limited, with graded exercise therapy removed in 2021 from NICE guidance as a result of 50% of patients experiencing a deterioration of their conditions (Kujawski et al., 2020, 2021; NICE Guideline [NG206], 2021). Treatments for depression or other psychiatric illness have limited benefit.
Once ME/CFS is established, many patients never fully recover and are ‘forgotten’ by society. However, the burden on families is enormous, with many families taking on a life-long commitment as carers. A better understanding of long COVID, a prolonged condition with many of the same symptoms observed in ME/CFS, therefore presents an opportunity that may also help in understanding and managing patients with ME/CFS, with options for the development of therapeutic interventions in a potentially more homogeneous condition.
ME/CFS research can also help with understanding of underlying pathophysiological mechanisms, such as:
dysregulated energy metabolism (Missailidis et al., 2020; Sweetman et al., 2020; Tomas et al., 2017, 2020),
exercise-induced plasma metabolome alterations (Germain et al., 2022),
dysbiotic gut (Morten et al., 2018; Xiong et al., 2021) and immune cell dysfunction (Milivojevic et al., 2020).
Evidence of metabolic dysregulation and prolonged immune dysregulation has also been found in long COVID patients (Phetsouphanh et al., 2022). This could potentially be due to viral persistence of SARS-CoV-2 or other viruses, though this has not been demonstrated in ME/CFS patients (Chang et al., 2021). SARS-CoV-2 persistence of 3–5 months has been reported in immunocompromised patients, but with no co-existing symptoms (Gaspar-Rodríguez et al., 2021), and this is an area of further study (Brodin et al., 2022).
lessons must be learnt from the poor management of ME/CFS patients
To progress, lessons must be learnt from the poor management of ME/CFS patients and long-term research programmes established to fully understand the biology behind long COVID and ME/CFS.
Certain insights may arise sooner in populations that have undergone particularly high levels of scrutiny of the disease course, progression and effects of interventions. These include individuals in elite athletics or the military, where physical fitness is key to success and resource-intensive monitoring of performance is routine.
From:
Long COVID: mechanisms, risk factors and recovery, by Ronan Astin, Amitava Banerjee, Mark R. Baker, Melanie Dani, Elizabeth Ford, James H Hull, Phang Boon Lim, Melitta McNarry, Karl Morten, Oliver O’Sullivan, Etheresia Pretorius, Betty Raman, Demetris S Soteropoulos, Maxime Taquet, Catherine N Hall in Experimental Physiology, Nov 2022 [https://doi.org/10.1113/EP090802]
Review abstract
Long COVID, the prolonged illness and fatigue suffered by a small proportion of those infected with SARS-CoV-2, is placing an increasing burden on individuals and society. A Physiological Society virtual meeting in February 2022 brought clinicians and researchers together to discuss the current understanding of long COVID mechanisms, risk factors and recovery.
This review highlights the themes arising from that meeting. It considers the nature of long COVID, exploring its links with other post-viral illnesses such as myalgic encephalomyelitis/ chronic fatigue syndrome, and highlights how long COVID research can help us better support those suffering from all post-viral syndromes.
Long COVID research started particularly swiftly in populations routinely monitoring their physical performance – namely the military and elite athletes. The review highlights how the high degree of diagnosis, intervention and monitoring of success in these active populations can suggest management strategies for the wider population.
We then consider how a key component of performance monitoring in active populations, cardiopulmonary exercise training, has revealed long COVID-related changes in physiology – including alterations in peripheral muscle function, ventilatory inefficiency and autonomic dysfunction.
The nature and impact of dysautonomia are further discussed in relation to postural orthostatic tachycardia syndrome, fatigue and treatment strategies that aim to combat sympathetic overactivation by stimulating the vagus nerve.
We then interrogate the mechanisms that underlie long COVID symptoms, with a focus on impaired oxygen delivery due to micro-clotting and disruption of cellular energy metabolism, before considering treatment strategies that indirectly or directly tackle these mechanisms. These include remote inspiratory muscle training and integrated care pathways that combine rehabilitation and drug interventions with research into long COVID healthcare access across different populations.
Overall, this review showcases how physiological research reveals the changes that occur in long COVID and how different therapeutic strategies are being developed and tested to combat this condition.
WAMES has been asking Health Boards in Wales during 2022 how they are implementing the 2021 ME/CFS NICE guideline. Although progress is excruciatingly slow, there are signs that some are making changes.
In order to represent people with ME/CFS we need to hear about your recent experiences with the NHS in your area.
Seasons greetings from all at WAMES
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Great news – the 
“More than 2 years after the adoption of the ME/CFS resolution, the European Commission has finally taken an initiative to support research on ME/CFS.
Results: 
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