ME/CFS & Covid-19: information for you & your doctor

COVID-19 Information and Resources – Bateman Horne Center, March 2020

 

Dr Lucinda Bateman

The Bateman Horne Center works for the medical advancement and treatment of  Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)and Fibromyalgia in Salt Lake City, Utah, USA.

In addition to the resources for patients and doctors on ME/CFS they have produced some briefing papers on Covid-19 and ME/CFS, many of which are helpful people from anywhere in the world.

Dr Suzanne Vernon

 

 

Medical Director: Dr Lucinda Bateman

Researcher: Dr Suzanne Vernon

 

 

Medical Considerations Letter — In the event you become acutely ill, the Medical Care Considerations Letter serves as a guiding resource for outside medical care intervention. The intent of this letter is to provide care professionals with further information about your illness of ME/CFS and/or severe FM to assist them with their medical intervention decisions.

“you should assume they have a serious, chronic, multisystem illness that may negatively impact their prognosis”

“Based on current evidence the underlying pathology of ME/CFS involves energy metabolism, the nervous system, and the immune system.”

COVID-19 and ME/CFS/FM Frequently Asked Questions: Drs. Bateman and Yellman answer specific questions about COVID-19 as it relates to ME/CFS/FM.

e.g. Are people with ME/CFS/FM at a higher risk than the general public of dying from COVID-19 if contracted? … The immune dysregulation of ME/CFS/FM may reduce ability to fight viral infections. Additionally, the presence of chronic inflammation, allergies, asthma, mast-cell activation may pose additional risks.

Suzanne D. Vernon, PhD, addresses: SARS, CoV-2, and COVID-19: A scientific overview of COVID-19, infection/transmission, testing, and treatments on the horizon.

Advance Care Planning: The Advance Care Planning document provides guidance for establishing advanced-care-directives and POLST documents.

Personal Guidance and Decision Making

e.g. Advance Directives: Everyone, not just those with ME/CFS, should document end-of-life wishes on paper regarding aggressive medical care in a life-threatening situation. Discuss with family and medical professionals as needed.

Videos

 

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Self-isolating with ME & Covid-19

What do people with ME need to know about Covid-19 and self-isolating?              updated 30 March 2020

 

The Health Minister for Wales has confirmed that people over 70 and people with a range of health conditions, including  neurological conditions, should self-isolate. People with a cough and/or high temperature are asked to self isolate for 7 days. Those who have had contact with someone with confirmed Covid-19 should self-isolate for 14 days. Everybody should stay at home except for essential shopping, short daily exercise a day, essential medical needs, travelling to and from essential work, but only where this cannot be done from home. Social distancing is required by all people when outside the home.

Many people with ME have been self-isolating to some extent for years, because they have been too ill to mix with others. They will be practised in ensuring they have enough food, cleaning products, personal care items, ‘distractions’ and medications, but the coronavirus Covid-19 poses some extra problems and questions.

Much is still not known about this new virus, but some clues are emerging from US research and from the badly affected countries of China and Italy.

People don’t have to have symptoms to be infectious

  • symptoms appear 2-14 days after infection
  • infection can last weeks, up to 37 days (China)
  • people can be infectious before & after symptoms are apparent, or without symptoms
  • it is uncertain how many have no obvious symptoms and are spreading the virus
  • no symptoms doesn’t necessarily mean less able to spread the virus

Infected people without symptoms might be driving the spread of coronavirus more than we realized

 

What are the symptoms?

Regular flu has similar symptoms to COVID-19. However, COVID-19 is more likely to cause shortness of breath and other respiratory symptoms. Some people have only mild symptoms while others are very ill and struggle to breathe.

Coronavirus symptoms            Check your symptoms

 

How does the virus spread?

  • it might be airborne to a small extent
  • it definitely remains on surfaces
  • it probably doesn’t survive in water
  • it survives to some extent in faeces
  • they are unsure if it survives in sewerage systems
  • it enters the body via the eyes, nose, mouth, not through the skin

Coronavirus can stay infectious for days on surfaces. But it’s still okay to check your mail

 

Who is most at risk?

So far the majority of people who have died have been over 60 with certain underlying health conditions, (but anyone can catch and pass on the virus):

  • heart disease
  • diabetes
  • hypertension – high blood pressure
  • chronic lung disease
  • some cancers

It is unknown to what extent people with ME are at greater risk but Dr Nancy Klimas believes we could be, as ‘one of the underlying problems is that the cells protecting you against viruses are less functional because overworked.’  Dr Charles Shepherd says: ‘an infection such as this will almost certainly cause a relapse, or significant exacerbation of symptoms’.

Public health England’s updated list of those at risk & requiring social distancing,  which includes Neurological Conditions, the obese and pregnant women.

 

What distance is safe when social distancing?

It may not be possible to avoid close contact with people giving you care, or for whom you care, but all sources say where possible stay 2 metres or 6 feet away from other people. Face masks won’t stop you catching the virus, but they may reduce the likelihood of passing it on to others.

Prof Hugh Pennington adds: “This virus needs 15 minutes of close contact with someone carrying it for you to have a reasonable chance of contracting it…But if someone who is infected coughs or sneezes on you directly then the droplets can infect you — that will be a much higher risk.”

 

How long does it last on surfaces?

When self isolating we will need to receive post, groceries etc. Are they safe? US researchers measured how long the virus stays active on various surfaces:

  • up to 24 hours on cardboard
  • up to 2 or 3 days on plastic and stainless steel.
  • it remained viable in aerosols—attached to particles that stay aloft in the air—for up to 3 hours.

Accept goods from outside, then put away perishables without contaminating other items. Either thoroughly wash the outside of the items or leave them until they are safe to touch.  Wash your hands and don’t touch your face!!

 

Can you become re-infected?

  • it is uncertain if or how long immunity lasts
  • it appears to be possible to relapse, though numbers are small
  • there are 2 variations of the virus and potentially it could mutate, though probably unlikely
  • in some countries testing for the presence of the virus may not be reliable so people only think they have recovered
  • most people recover but some experience reduced lung function following recovery, which will require some rehab
  • some concerns have been expressed that the virus may trigger an ME-like reaction as happened with SARS.

Coronavirus: can you get covid-19 twice or does it cause immunity

 

What kills the virus?

  • soap & water – dried by single use paper or warm air
  • alcohol based sprays on surfaces – leave 5 mins before wiping
  • hand sanitisers
  • chlorine
  • cooking removes any danger from food
  • bleach – disinfects, but pollutes- 5 tbsp (1/3 cup) of bleach per gallon of water

BBC: How long does the coronavirus last on surfaces?

 

When to get tested?

The UK is stepping up testing of frontline workers but still only wants to test those whose symptoms become serious due to shortage of tests – if experiencing severe symptoms ring 111 anywhere in Wales.  (Don’t press any numbers, just hold to be connected to NHS Wales, rather than NHS England)

 

How should it be treated?

Treatment for Coronavirus Disease (COVID-19)

 

How can I self-isolate?

Information on what it means to self-isolate in your home, or in a room within your home can be found on the UK Government website.  Increasingly local support schemes are being set up by concerned citizens to make it possible for people to self-isolate, even when they don’t have friends or family nearby, or access to online deliveries.

For info about how to get or give support, find your COVID-19 Facebook support group here Some Council & AVO websites list local sources of help and delivery services. Age Cymru and RVS provide support.

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Welsh Government proposes new advisory group for ME/CFS & pain

New Welsh Government Advisory Group for ME/CFS and pain

 

2014 Task & Finish Group Report

It is five years since the Welsh Government published a Task & Finish Report giving Health Boards an action plan for improving services for ME/CFS and Fibromyalgia.

WAMES has been a member of the national advisory group for the T&FG Report – the All Wales Implementation Group (AWIG) – which has met 4 times a year with representatives from Health Boards and government.

WAMES has also been actively challenging individual Health Boards to implement the recommendations, with little success. Health Boards have repeatedly ignored calls from patients and government to take ME service planning seriously.

New advisory group

The Welsh Government has now decided to take a different approach and merge three groups (Persistent Pain, Arthritis and ME/CFS and FM) into one advisory group. The aim will be to report to the Chief Medical Officer on issues the conditions share and bespoke issues relating to specific conditions. Established channels of communication will then be used to engage with Health Boards.

It is hoped the new group will be established by April 2020 and the new structure will be monitored for effectiveness after sufficient time has passed.

In addition Health Education and Improvement Wales (HEIW) will be in attendance at the new group so they understand the issues surrounding education, training and workforce development.

The Welsh Government research and development team – Health and Care Research Wales –  have confirmed funding is available for well designed research projects.

Patient representation

WAMES has questions about whether this new group will be more effective in enlisting Health Board commitment to providing care for people with ME than previous approaches, but we are pleased that the Welsh Government recognises the need to find a better way of working.

Kevin Francis, the Policy lead for ME in the Welsh Government is happy to meet with groups who support people living with ME, FM and pain conditions. He wishes to better understand the issues for those living with these conditions.  Please let Jan know if you wish to take up this offer. jan@wames.og.uk

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Health services for ME in Wales – a 20 year WAMES update

Health services for ME in Wales – a WAMES update

 

WAMES in Wales

It is now 20 years since the Welsh Government (WG) was established. At that time NHS Wales became independent and WAMES began campaigning in Wales for improvements to health services.  Over the years we have talked to numerous Health Ministers, civil servants, AMs, Health Board executives and NHS staff. We have taken part in focus groups, stakeholder groups, working groups and scoping exercises. We have run surveys of patient experience and campaigns to raise awareness in government and the NHS.

That is what WAMES has done, largely behind the scenes, to try to improve healthcare for people with ME. How did the Welsh Government and NHS Wales respond?

Welsh Government & ME

  • Since 1999 many AMs over the years have joined us in asking questions about the lack of awareness and services, leading to one of the largest postbags the government have received on a single medical condition.
  • In 2004 a series of Masterclasses were planned around the country.  The interest shown by GPs was so low, only one took place.
  • In 2009 a Task & Finish Group was set up to explore whether a clinical pathway was needed and decided it was.
  • WAMES joined a pathway working group to produce a Map of Medicine pathway for Wales. This was unfortunately based on the NICE guidelines and shortly afterwards the WG withdrew from the Map of Medicine database (based in England).
  • The Health Minister wrote to Health Boards urging them to implement the pathway and improve services. None appeared to do so.
  • In 2013 a second Task & Finish Group was set up with representation from the WG, NHS and patients. A report was published in 2014 outlining steps each Health Board should take to improve services. Few Health Boards have implemented more than one or two of the steps!
  • In 2014 An All Wales Implementation group (AWiG) was set up with reps from WG, the NHS and patients to oversee the implementation of the report.

Has healthcare for ME improved?

It is clear that there is an increase in the number of GPs who have heard of ME, though many still wish to call it CFS and focus on fatigue. There is still a belief that ME is difficult to diagnose and nothing can be done to help. Some still believe it is a psychological condition or that it simply doesn’t exist at all. Many patients tell us they still cannot find someone within Wales to give them an informed diagnosis or to refer them to support services.

WAMES and local groups in Wales still get too many helpline calls from people who are enduring appalling treatment from untrained and prejudiced health care professionals.

The existing services for pain and fatigue continue to offer rehabilitation services based on GET and CBT, though few people with ME are interested. Reports of relapse caused by this approach continue to reach us from people with ME who have undergone the course in NW Wales. Suicides and attempted suicides have increased in number.

Why is progress so slow?

There are many possible reasons contributing to this:

  • Continuing reorganisation and financial difficulties in Health Boards
  • Constantly changing personnel in HBs and Welsh Government
  • Lack of a clinical champion for Wales
  • No funding from the Welsh Government
  • Insistence that answers should come from within Wales, when no-one has sufficient experience or knowledge of ME
  • No obligation for HBs to implement improvements
  • Overworked doctors, who are waiting for a diagnostic test and treatments to materialise before becoming involved with this patient group
  • An unwillingness to look beyond NICE and listen to patients and explore the biomedical research
  • A feeling that ME is controversial due to the continuing activities of a biopsychosocial community that view ME as perpetuated by muscle deconditioning and faulty illness beliefs – in contradiction to the latest research.

WAMES believes that a key stumbling block is the shortage of informed GPs willing and able to diagnose.   Should diagnosis improve there would be statistics of the numbers and location of patients and it would be harder for HBs to ignore ME. The evidence for the need for services for this patient group would then be clear.

What next?

The All Wales Implementation Group (AWIG) has a new government policy lead.

Current work priorities are:

  • Inclusion of ME/CFS in IMTPs (Health Boards 3 year work plans)
  • Redesigning a clinical pathway
  • Developing patient information sheets
    Discussing the development of GP training resources with Health Education and Improvement Wales (HEIW)

WAMES will:

  • continue to represent people with ME on AWiG
  • continue to explore awareness raising possibilities with the RCGP;
  • work with the NHS in devising an ME self-management programme
  • represent Welsh people with ME on the NICE guideline review
  • take every opportunity to raise awareness of neurological ME in NHS Wales

Get in touch if you would like to support WAMES continue its work to improve services for people with ME in Wales  jan@wames.org.uk

 

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Neural based assessment of mind wandering during a fatigue inducing motor task: is task failure due to fatigue or distraction?”

Neural based assessment of mind wandering during a fatigue inducing motor task: Is task failure due to fatigue or distraction? by Surbhi Hablani, Ciara Marie O’Higgins, Declan Walsh and Richard B Reilly in 9th International IEEE EMBS Conference on Neural Engineering (San Francisco, CA, USA) March 20 – 23 , 2019

 

Abstract:

This study developed a method for investigating mind wandering (MW) in a fatigue-inducing motor task. To develop research protocols to assess fatigue in clinical cohorts, it is important that participants perform the task at hand to the best of their ability and with their complete attention. Therefore, it is important to know if the participant fails in the task due to fatigue or lack of sustained attention as a result of MW.

Two cohorts of 12 healthy controls and Chronic Fatigue Syndrome (CFS) subjects performed a hand-grip fatigue-inducing motor task while EMG and EEG were simultaneously recorded. Frontal midline theta (FMT) and parietal alpha power were calculated throughout the task.

While no significant differences were obtained in the FMT power for both cohorts, significant differences in parietal alpha power for the healthy subjects across the task shows they may have experienced MW unlike CFS subjects, who had to put in consistent effort to sustain attention during the task, which could imply fewer MW events.

Assessing MW using EEG can serve as an objective marker for evaluating performance in a task and, for assessing the impact of fatigue on the ability to sustain attention.

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The development of a consistent Europe-wide approach to investigating the economic impact of ME/CFS

The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of Myalgic Encephalomyelitis (ME/CFS): A Report from the European Network on ME/CFS (EUROMENE) by Derek FH Pheby, Diana Araja,  Uldis Berkis, Elenka Brenna, John Cullinan, Jean-Dominique de Korwin, Lara Gitto, Dyfrig Hughes, Rachael M Hunter, Dominic Trépel, X Wang-Steverding in Healthcare 31 March 2020

 

Abstract:

We have developed a Europe-wide approach to investigating the economic impact of ME/CFS, facilitating acquisition of information on the economic burden of ME/CFS, and international comparisons of economic costs between countries.

The economic burden of ME/CFS in Europe appears large, with productivity losses most significant, giving scope for substantial savings through effective prevention and treatment. However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to different, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients.

Other problems include, as for other conditions, difficulties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries.

We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in different countries using an agreed data list.

We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to inform future economic evaluations in ME/CFS.

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Systemic hyperalgesia in females with Gulf War Illness, CFS & FM

Systemic hyperalgesia in females with Gulf War Illness, Chronic Fatigue Syndrome and Fibromyalgia, by Amber A Surian, James N Baraniuk in Scientific Reports vol 10, no. 5751 (2020)

 

Research abstract:

Pain is a diagnostic criterion for Gulf War Illness (GWI), Chronic Fatigue Syndrome (CFS), and fibromyalgia (FM). The physical sign of systemic hyperalgesia (tenderness) was assessed in 920 women who were stratified by 2000 Kansas GWI, 1994 CFS, and 1990 FM criteria.

Pressure was applied by dolorimetry at 18 traditional tender points and the average pressure causing pain determined. GWI women were the most tender (2.9 ± 1.6 kg, mean ± SD, n = 70), followed by CFS/FM (3.1 ± 1.4 kg, n = 196), FM (3.9 ± 1.4 kg, n = 56), and CFS (5.8 ± 2.1 kg, n = 170) compared to controls (7.2 ± 2.4 kg, significantly highest by Mann-Whitney tests p < 0.0001, n = 428).

Receiver operating characteristics set pressure thresholds of 4.0 kg to define GWI and CFS/FM (specificity 0.85, sensitivities 0.80 and 0.83, respectively), 4.5 kg for FM, and 6.0 kg for CFS.

Pain, fatigue, quality of life, and CFS symptoms were equivalent for GWI, CFS/FM and CFS. Dolorimetry correlated with symptoms in GWI but not CFS or FM. Therefore, women with GWI, CFS and FM have systemic hyperalgesia compared to sedentary controls.

The physical sign of tenderness may complement the symptoms of the Kansas criteria as a diagnostic criterion for GWI females, and aid in the diagnosis of CFS. Molecular mechanisms of systemic hyperalgesia may provide new insights into the neuropathology and treatments of these nociceptive, interoceptive and fatiguing illnesses.

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The presence of overlapping quality of life symptoms in primary antibody deficiency (PAD) & CFS

The presence of overlapping quality of life symptoms in primary antibody deficiency (PAD) and chronic fatigue syndrome (CFS), by Rhea A Bansal, Susan Tadros, Amolak S Bansal in Allergy, Asthma & Clinical Immunology Vol 16, no: 21 (2020), March 30, 2020

Research abstract:

Background:
Fatigue, sleep disturbance and altered mood are frequently reported in patients with primary antibody deficiency syndrome (PADS) on adequate immunoglobulin replacement therapy. This study aimed to determine the frequency of symptoms compatible with chronic fatigue syndrome (CFS) in patients with PADS.

Methods:
The study involved the distribution of 682 self-completed postal questionnaires to ascertain the presence and frequency of symptoms compatible with CFS in patients with PADS. The reporting of symptoms for each patient were scored against the CFS diagnostic criteria used within our own South London Chronic Fatigue service.

Results:
The frequency of symptoms compatible with CFS were evident in 26 of the 188 patients (16.25%) returning adequately completed questionnaires. We considered a bias in the return of questionnaires amongst PADS patients with fatigue to be likely. As such we estimated the minimum frequency of CFS in patients with PADS to be 4% based on the 682 PAD patients to whom the questionnaire was distributed. This was significantly higher than the 0.5% estimate of the prevalence of CFS in the community in western populations. While the presence of significant fatigue correlated with the presence of anxiety and depression, there was no association with self-reported lung damage. Sleep disturbance affected 60% of the PAD patients returning satisfactory questionnaires and as expected the CFS score was higher in those with greater physical limitation.

Conclusions:
We conclude that patients with PADS have a high frequency of fatigue, low mood and anxiety. We suggest routine questioning for the symptoms of fatigue, disturbed sleep and altered mood in patients with PADS. The use of several treatment strategies in CFS may prove beneficial in improving the quality of life of patients with PAD.

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Video: ME & PEM (Post Exertional Malaise)

ME & PEM: English language video from Norway

 

This 3 minute film will give you an introduction to PEM (Post Exertional Malaise). Once you’ve understood what PEM is about, you’ll know a lot more about the debilitating chronic disease ME (Myalgic Encephalomyelitis).                     Published 2 April 2020

The film is made by the Norwegian ME Association (Rogaland County) with professional support from psychologist Ketil Jakobsen and paediatric neurologist Kristian Sommerfelt.

‘Fatigue is not the same as ME’

‘PEM is a long term worsening of symptoms that can be triggered by a relatively small exertion’

‘It is a common belief that everyone benefits from activity and effort, but this is not necessarily the case for patients with ME.’

‘The most important thing is to genuinely listen and believe what the patient is saying.’

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Covid-19 among ME/CFS patients: take part in a research study

Research on Covid-19 among ME/CFS patients

 

The European ME Alliance (EMEA) invites people to take part in a study to find out whether:

  • ME/CFS patients more often get infected with COVID-19 than other people?
  • people with ME/CFS have other and/or more or more severe symptoms than others?

Internist Dr. Joris Vernooij and Dr. Rogier Louwen of Erasmus University, Rotterdam in the Netherlands, have developed an online scientific research project in which ME/CFS patients with and without COVID-19 and a control group of people around the patients are urged to participate.

The ME/CFS Foundation Netherlands has invited all ME/CFS patient organisations in the Netherlands and in EMEA member countries to participate in the study.

The initiators of the project and all those involved in the research work are working completely pro bono.  Therefore, no costs will be incurred by participants.

It will involve short weekly online surveys.  You will need to register with Erasmus University and will need a mobile phone to receive a passcode.

Participate in the research

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Complex syndromes of chronic pain, fatigue & cognitive impairment linked to autoimmune dysautonomia and small fiber neuropathy

Complex syndromes of chronic pain, fatigue and cognitive impairment linked to autoimmune dysautonomia and small fiber neuropathy, by Yehuda Shoenfeld, Varvara A Ryabkova, Carmen Scheibenbogen, Louise Brinth, Manuel Martinez-Lavine, Shuichi Ikeda, Harald Heidecke, Abdulla Watad, Nicola L Bragazzi, Joab Chapman, Leonid P Churilov, Howard Amital in Clinical Immunology vol 214, May 2020 [https://doi.org/10.1016/j.clim.2020.108384]

 

Highlights

  • Autoimmune aspects of CFS, POTS, CRPS and SIIS are discussed.
  • The common denominators of anti-GPCR AAb and SFN are identified for these syndromes.
  • A new concept of autoimmune neurosensory dysautonomia is suggested.
  • Sjogren’s syndrome can illustrate the suggested concept.

 

Review abstract:

Chronic fatigue syndrome, postural orthostatic tachycardia syndrome, complex regional pain syndrome and silicone implant incompatibility syndrome are a subject of debate among clinicians and researchers. Both the pathogenesis and treatment of these disorders require further study.

In this paper we summarize the evidence regarding the role of autoimmunity in these four syndromes with respect to immunogenetics, autoimmune co-morbidities, alteration in immune cell subsets, production of autoantibodies and presentation in animal models.

These syndromes could be incorporated in a new concept of autoimmune neurosensory dysautonomia with the common denominators of autoantibodies against G-protein coupled receptors and small fiber neuropathy. Sjogren’s syndrome, which is a classical autoimmune disease, could serve as a disease model, illustrating the concept.

Development of this concept aims to identify an apparently autoimmune subgroup of the disputable disorders, addressed in the review, which may most benefit from the immunotherapy.

Read full paper

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Human Leukocyte Antigen alleles associated with ME/CFS

Human Leukocyte Antigen alleles associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), by Asgeir Lande, Øystein Fluge, Elin B Strand, Siri T Flåm, Daysi D Sosa, Olav Mella, Torstein Egeland, Ola D Saugsta, Benedicte A Lie, Marte K Viken in Scientific Reports vol 10, no. 5267, 24 March 2020

 

Research abstract:

The etiology and pathogenesis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are unknown, and autoimmunity is one of many proposed underlying mechanisms.  Human Leukocyte Antigen (HLA) associations are hallmarks of autoimmune disease, and have not been thoroughly investigated in a large ME/CFS patient cohort.

We performed high resolution HLA -A, -B, -C, -DRB1, -DQB1 and -DPB1 genotyping by next generation sequencing in 426 adult, Norwegian ME/CFS patients, diagnosed according to the Canadian Consensus Criteria. HLA associations were assessed by comparing to 4511 healthy and ethnically matched controls. Clinical information was collected through questionnaires completed by patients or relatives.

We discovered two independent HLA associations, tagged by the alleles HLA-C*07:04 (OR 2.1 [95% CI 1.4–3.1]) and HLA-DQB1*03:03 (OR 1.5 [95% CI 1.1–2.0]). These alleles were carried by 7.7% and 12.7% of ME/CFS patients, respectively. The proportion of individuals carrying one or both of these alleles was 19.2% in the patient group and 12.2% in the control group (OR 1.7 [95% CI 1.3–2.2], pnc = 0.00003).

ME/CFS is a complex disease, potentially with a substantial heterogeneity. We report novel HLA associations pointing toward the involvement of the immune system in ME/CFS pathogenesis.

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NICE guideline work postponed

NICE – National Institute for Health and Care Excellence letter, 27 March 2020

 

Dear Stakeholder,

We wanted to update you on how NICE is working to support the NHS and wider health and care sector at this challenging time, and to provide more details on how the COVID-19 pandemic is affecting our normal ways of working.

During this period of emergency, NICE has adapted its priorities to support the NHS, local authorities and the wider health and social care sector to tackle COVID-19. We will only publish guidance that is therapeutically critical or focused on COVID-19-related issues.

The stakeholders and advisory committees involved in the development of our guidelines include a large number of frontline staff. We know that their priority in this crisis is caring for patients. We do not want to draw them away from this vital work.

For this reason, we have cancelled all guideline committee meetings and we will not be publishing any draft or final guidelines until further notice (except for COVID-19 rapid guidelines – see below).

At present we are not able to confirm the revised timelines for each guideline. We will be in touch to provide further information as soon as possible. For more information in the meantime, please visit our dedicated webpage https://www.nice.org.uk/covid-19

COVID-19 rapid guidelines
We are working closely with NHS England and NHS Improvement to develop rapid guidelines on topics relevant to the management of COVID-19. These will be published weekly and will focus on a range of clinical settings.

In addition, we are producing rapid evidence reviews on medicines used to manage COVID-19 and its symptoms.

All of our COVID-19 guidelines and evidence reviews will be published on the NICE website. Enquiries about this work should be sent to nice@nice.org.uk

 

Kind regards,

Katie Stafford,  Senior Guideline Coordinator

Centre for Guidelines

 

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