Beyond the borders of your abilities – mission possible!

,

Summer is a great time to travel and explore new places. Unfortunately, traveling is not always possible for people with neuromuscular disorders in Bulgaria. The reason for this is because of the inaccessible environment and difficult access to many touristic places. In the last few years thanks to different voluntary organizations like the association “Ela i Ti” (“Come and you”), traveling and visiting inaccessible places become possible for people with NMD. One of the latest exciting trips, which was organized by the association was in the cave “Bacho Kiro” in Dryanovo – Bulgarian city, situated in the Gabrovo Province.

Ms. Gergana Doychinova, founder of the voluntary organization “Ela i Ti” (“Come and you”), organized a visit to the cave “Bacho Kiro” for 15 people with neuromuscular disorders and other physical impairments. The main purpose was to provide an opportunity for people with NMD to visit a place, which is not accessible and impossible to reach in other circumstances. In this way they were able to go beyond the borders of their abilities and to feel the unique atmosphere of one of the most beautiful caves in Bulgaria. This incredible journey was funded by the project “Social Innovations”, established by Sofia Municipality. This visits was possible thanks to the support of many volunteers from the “Mountain rescue” team from Pazardzik Province and “Cave rescue” team as well as many other volunteers across the state. One of the main aims of Gergana and “Ela i Ti” (“Come and you”) is to create united network of support and cooperation between volunteers, who have the abilities to help people with neuromuscular disorders to reach inaccessible places. This happened during the visit to the cave “Bacho Kiro”. People with NMD were able to see the incredible species of animal population and to take a closer look to the amazing cave’s formations. This joyful experience was shared with the volunteers, who helped them to go beyond the borders of their physical abilities.

Ms. Gergana Doychinova shared the following for this unique experience: “The main purpose of this event is not only to show to people with NMD places, which is difficult to reach in other way, but to make them to feel part of a network of support, establishing new friendships. They are creating new friends and they are sharing their unique experience with other people.”. This helps to increase the adventurous spirit and to make people living with NMD to believe that everything is possible. This positive life perspective is helping people to feel part of a group of supporters and to believe in their dreams. The next stop for this incredible team of dreamers is Prohodna cave, which is famous for the nickname “The eyes of God”. Visiting such amazing places, people with neuromuscular disorders feel included in the society and they are happy to share their wonderful experience with other people. This kind of visits proves the facts that we are valuable members of the community and we deserve to live in a non-biased society, cooperating with supporters, like the volunteers from “Ela i Ti” (“Come and you”).

World Duchenne Awareness Day 2020

EAMDA is supporting activities towards awareness about Duchenne (DMD) and Becker Muscular Dystrophy. Please visit WDO webpage and see the wonderful video – Together, we are stronger:

WMS guidelines on COVID-19 for NMD community – update June 15, 2020

COVID-19 and people with neuromuscular disorders:

World Muscle Society position and advice

The category of neuromuscular disease (NMD) covers a wide range of different diagnoses with widely varying levels of disability even in people with the same diagnosis. It is difficult, therefore to make specific recommendations that apply generally. The following are recommendations that apply to numerous neuromuscular disorders. These recommendations are designed primarily for patients who have been diagnosed with a neuromuscular disorder, their carers, general neurologists and non-specialist medical providers. They are also intended to inform neuromuscular specialists particularly regarding frequently asked questions and basic service requirements. In-depth reference links are provided.

Note: COVID-19 is a rapidly evolving field. The advice in this document is subject to regular revision. Please ensure that you are using the most up to date version of the document.

1. Are people with neuromuscular disease (NMD) at higher risk?

So far, there is no evidence that hereditary neuromuscular disorders confer a higher risk of infection by the SARS-CoV-2 virus. However, neuromuscular diseases and their treatments may influence the patient’s ability to cope with infection or its systemic effects.

National neurological associations and neuromuscular networks (Association of British Neurologists, European Reference Network EURO-NMD, others) have produced guidance on the impact of COVID-19 on neurological disorders and their management. These documents define the risk of a severe course of COVID-19 as high or moderately high in all but the mildest forms of NMD. Features conferring a high or very high risk of severe disease include, for example:

  • Muscular weakness of the chest or diaphragm, resulting in respiratory volumes less than 60% predicted (FVC<60%), especially in patients with kyphoscoliosis
  • Use of ventilation via mask or tracheotomy
  • Weak cough and weak airway clearance due to oropharyngeal weakness
  • Presence of tracheostoma
  • Cardiac involvement (and/or on medication for heart involvement)
  • Conditions with a risk of deterioration with fever, fasting or infection (eg. neuromuscular junction or metabolic disorders)
  • Conditions with a risk of rhabdomyolysis with fever, fasting or infection
  • Concomitant diabetes and obesity
  • Patients taking steroids and undergoing immunosuppressant treatment

2. What do people with NMD need to do to avoid infection?

COVID-19 spreads through droplet infection when an infected person coughs, sneezes or talks, or potentially via touching a surface carrying infectious droplets. People with NMD and a high risk of a severe course of COVID-19 infection, as defined above, should undertake the following precautions:

  • Social distancing of at least 1.5-2 metres (6 feet) is a minimum requirement. For high risk individuals (as defined in 1.), self-isolation is advised. Official advice on how to self-isolate should be followed. Decreasing infection risk may allow gradual de-escalation.
  • People are encouraged to work from home or stagger their working times if possible.
  • Avoid large gatherings and public transport. People in general are urged to limit visits to vulnerable persons.
  • Frequent hand-washing (20 seconds with soap and warm water), use of 60% alcohol-based hand sanitizers, and surface disinfection are crucial.
  • Caregivers should be in-house, if possible. Essential visiting care givers (for instance, providers of backup support for ventilatory assistance) should wear face masks and adequate PPE according to up to date official guidance, to prevent passing on the virus.
  • Visiting physiotherapy is discouraged, however, physiotherapists should provide advice on maintaining physical activity remotely, via phone or videolink. In case a visit is required, an adapted protective setting has to be ensured (Fpp2 mask for the physical therapist and the carer present in the room, surgical mask for the patient, protective clothes, gloves and glasses or helmet should be used by the physical therapist).
  • It is important to be prepared for all eventualities including when assistants are absent due to illness or quarantine. The person responsible for organizing home care should have an overview of the personnel situation at all times. Plans should be made for how to best meet the needs of the individual without resorting to hospitalization.
  • Government advise on protection is regularly updated, and the authors advise patients, carers and medical professionals to follow the up to date recommendations from official websites in their country.

3. What consequences does the risk of COVID-19 infection have for treatments used in people with NMD?

  • Patients must ensure they have an adequate supply of medication and of ventilatory support equipment for a period of prolonged isolation (at least 1month supply).
  • Patients and carers should make use of online and telephone-based pharmacy and equipment ordering and delivery services.
  • Patients and carers need to be comfortable with emergency procedures specific to their condition and their equipment.
  • DMD patients on steroid regimens should continue their medication. Steroids must never be stopped suddenly, and there may be a need to increase the steroid dose when unwell.
  • Immunosuppression in inflammatory muscle disease, myasthenia gravis, and peripheral nerve disease should not be discontinued pre-emptively except under specific circumstances and in consultation with the neuromuscular specialist.
  • Whether and when to start new immunosuppressive treatment may be influenced by how severe the risk of infection is perceived, versus risks of deferring treatment.
  • Isolation requirements may impact on treatment regimens requiring hospital procedures (i.e. nursinersen (Spinraza), alglucosidase alfa (Myozyme), intravenous immunoglobulin (IVIg) and rituximab infusions or treatments related to clinical trials). These treatments should typically not be stopped, but moving treatment to a non-hospital setting should be considered (home-visiting or outreach nurses), for which cooperation with manufacturing companies may be negotiated. IVIg can be changed to subcutaneous immunoglobulin whenever possible. Trial centres should be consulted for advice on clinical trials.

4. What needs to be done to assure ventilatory services when isolating (LVR bags, home ventilators etc.)

  • Backup and advice hotlines should be offered by the patients’ Neuromuscular Centres.
  • Patients should have an alert card/medical bracelet providing the Neuromuscular Centre contact.
  • Neuromuscular Centres should actively contact patients on ventilatory support to ensure they have relevant information and adequate equipment.

5. When should people with NMD seek admission if they develop symptoms of infection?

Inpatient admission should be avoided if possible, but should not be delayed when necessary. This can be a difficult decision. People with NMD need to be aware that:

  • Emergency services may be under severe pressure.
  • Individual countries may have triaging procedures in place. These may affect the potential for intensive care admission for people with NMD who require ventilation. Specifically, the terms “incurable” and “untreatable” may be confused by medical staff. Neuromuscular disorders may be incurable, but they are not untreatable, and the implications for treatment decisions are very different.
  • Use of patients’ home equipment (i.e. ventilators) may be prohibited by some hospital infection-control policies, or require modifications. Ideally, there should be a back-up plan.

6. What applies to immunosuppressive treatment in patients who have suspected or proven COVID-19 infection?

  • The decision to temporarily withhold immunosuppressant medication, or change to a different agent must be made in the individual situation, with the neuromuscular specialist.
  • Steroid treatment should not be withheld or stopped.
  • IVIg, plasma exchanges, and complement inhibitor treatment such as Eculizumab are not expected to affect the risk of COVID-19 infection or of severe disease.

7. Can treatments for COVID-19 have effects on neuromuscular disease?

  • Numerous specific treatments for COVID-19 are under investigation. Some of these can affect neuromuscular function significantly: for example, chloroquine and azithromycin are unsafe in myasthenia gravis, except when ventilatory support is available. Cardiotoxicity and QT-prolongation though chloroquine and hydroxychloroquine can potentially worsen cardiomyopathy.
  • Other treatments may have effects on specific neuromuscular diseases (in particular, metabolic, mitochondrial, myotonic and neuromuscular junction disorders), and anatomical peculiarities may influence options for treatment (e.g. prolonged prone ventilation)
  • Experimental treatments for COVID-19 may be offered “compassionately”, i.e. outside trial conditions. They should only be taken after consultation with the patient’s neuromuscular specialist.
  • So far, we are not aware of trials of live virus vaccines, where there could be a risk for immunosuppressed patients.

8. What should neuromuscular specialists do to assist Emergency Medical and Intensive Care decisions on admission to units, escalation of treatment, and ceilings of care in neuromuscular patients?

Decisions on patient admission to Intensive Care may be affected by anticipated or existing capacity problems. Triaging may have been instituted. This can have practical and ethical consequences.

  • There must be close collaboration between neuromuscular and respiratory physicians.
  • The neuromuscular specialist must be available to play a role in ensuring fair provision of intensive care to NMD patients. Patients should not be labelled as “terminal” and triaged for non-treatment simply on the basis of their disability and diagnosis.
  • Ideally, neuromuscular specialists will have involved themselves in formulating hospital policies, decision-making algorithms and documentation forms.
  • Neuromuscular specialists must develop guidelines for treatment that ensure patients remain at home as long as possible.

9. What patient support should neuromuscular centres provide?

Neuromuscular centres and specialist services should aim to provide the following:

  • Patient hotlines staffed by neuromuscular care advisors, physiotherapists and other specialist personnel, with specialist physician backup (paediatric and adult).
  • Support through routine specialist clinics should be continued through remote monitoring using structured telemedical phone and video links. Multiple, nationally approved platforms are now available with guidance from specialist societies.
  • Many clinical assessments such as swallowing tests can be done remotely by video link.
  • Outreach ventilatory support strategies should be provided.
  • Strategies to maintain hospital-based treatments with minimal disruption.
  • Neuromuscular specialists should be in discussion with their hospitals’ Emergency, Medical and Intensive Care departments on restrictions for use of home NIV equipment.
  • Neuromuscular specialists should support their hospital to define approved devices and ensure their availability (i.e. ICU mask systems with viral particle filters to permit use of patients’ NIV machines in hospital).
  • Liaison and shared care with Intensive Care services.
  • Provide advice on rehabilitation in the home for neuromuscular patients, including Telehealth approaches
  • Facilitation of mask and PPE supply for patients and carers

10. De-escalation of shielding measures – “Déconfinement”

Since the last update of these recommendations, a new discussion is emerging, concerning the safe de-escalation of some aspects of shielding and self-isolation to allow people with neuromuscular disorders to resume social interactions and education, work, or attend scheduled medical appointments.

Currently, there is considerable variation in the way national restrictions and the relaxation of restrictions are evolving, and this impacts on people with neuromuscular conditions, their families and carers, who seek advice from their neuromuscular services.

Despite the range of national approaches to this issue, the WMS agrees on the following considerations regarding risk stratification:

  • For people with neuromuscular disorders who are considered at low risk (see paragraph 1 of the Advice and Position document), i.e. no cardiorespiratory impairment, no immunosuppression, and no significant risk-elevating factors and comorbidities, we suggest the cautious following of local and national guidance. In doubt, consultation with the neuromuscular specialist is recommended.
  • For patients with medium risk, for instance with mild respiratory involvement, we advise a detailed discussion with their neuromuscular specialist, or with the physician responsible for their neuromuscular care. Controlled relaxation of restrictions, strictly in a secure environment, may be considered, with appropriate caution and taking into account local and national recommendations.
  • Special considerations must remain for people considered at “high” or “very high” risk (see paragraph 1 of the original document), in particular people with severe or unstable respiratory compromise (FVC < 60% predicted); reliance on home ventilation; clinically relevant impairment of heart function; immunosuppression; or severe weakness requiring multiple carers or complex ongoing support. For these patients, measures to avoid infection including self-isolation should remain in place. Carers and family members who are no longer in self-isolation must continue to use masks and barriers when in contact with the person at risk.
  • For children and adolescents with neuromuscular disorders, and their parents, the major question will be whether a return to school and child care centres is acceptable. The safety of children with neuromuscular disorders will also be a concern for the schools and childcare centres these children attend. The decision to return will depend on individual factors, regarding both the individual and institution, but details such as staffing levels and hygiene protection according to national guidelines, will be important. Some recommendations are already available (see References); internationally there is significant variation.
  • Patients also need to be reassured that they can safely attend hospitals for important procedures such as sleep studies, cardiac tests, and initiation of non-invasive ventilation. Neuromuscular specialists need to monitor their patient cohort to detect what medical procedures or monitoring may have been postponed during “lockdown”, and begin arrangements for these services to be safely resumed. Neuromuscular services should ensure that their hospital is making adequate provisions for the safety of people with neuromuscular disorders attending, including staff adequately equipped with personal protection, designated “green” areas in hospitals for non-COVID-19 related treatments, and safe waiting areas and consulting rooms with appropriate distancing between patients and staff.

Experience so far (15-06-2020): Based on an unpublished survey among WMS members, we urge particular caution in some patient groups, despite their being ambulatory and socially active. These may include patients with conditions that are likely to exacerbate through febrile illness, and those with prominent nasopharyngeal weakness. In our case observations worldwide, Myasthenia gravis and Myotonic dystrophy have featured prominently in this group.


Further information links:

https://www.theabn.org/page/COVID-19

https://neuromuscularnetwork.ca/news/COVID-19-and-neuromuscular-patients-la-COVID-19-et-les-patients-neuromusculaires/ (updated version April 3rd 2020)

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-COVID-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-COVID-19

link https://ern-euro-nmd.eu/

https://www.enmc.org (European Neuromuscular Centre website) WMS COVID-19 advice V5 15th June 2020

https://www.aanem.org/Practice/COVID-19-guidance (American Association of Neuromuscular and Electrodiagnostic Medicine AANEM website)

https://www.apta.org/telehealth (American Physical Therapy Association advice on telehealth)

https://filnemus.fr (French neuromuscular reference centres network with extensive advice on medical and social issues around Covid19)

http://www.filnemus.fr/menu-filiere/evenements/actualites/article/news/les-recommandations-de-filnemus-dans-la-periode-du-deconfinement/?tx_news_pi1%5Bcontroller%5D=News&tx_news_pi1%5Baction%5D=detail&cHash=56f89313ee508b50526c7dbfb952dd7a
https://www.nvk.nl/over-nvk/vereniging/dossiers-en-standpunten/covid-19/document-covid-19?dossierid=26542080

Authors of this document:

Collated by Maxwell S. Damian, PhD, FNCS, FEAN and the members of the Executive Board of the WMS (www.worldmusclesociety.org) in cooperation with members of the Editorial Board of Neuromuscular Disorders, official journal of the WMS

WMS guidelines on COVID-19 for NMD community – update May 11, 2020

For update 11.5.2020 follow this link

(for translations visit https://www.worldmusclesociety.org/news/view/150 )

The category of neuromuscular disease (NMD) covers a wide range of different diagnoses with widely varying levels of disability even in people with the same diagnosis. It is difficult, therefore to make specific recommendations that apply generally. The following are recommendations that apply to numerous neuromuscular disorders. These recommendations are designed primarily for patients who have been diagnosed with a neuromuscular disorder, their carers, general neurologists and non- specialist medical providers. They are also intended to inform neuromuscular specialists particularly regarding frequently asked questions and basic service requirements. In-depth reference links are provided.

Note: COVID-19 is a rapidly evolving field. The advice in this document is subject to regular revision. Please ensure that you are using the most up to date version of the document.

1.  Are people with neuromuscular disease (NMD) at higher risk?

So far, there is no evidence that hereditary neuromuscular disorders confer a higher risk of infection by the SARS-CoV-2 virus. However, neuromuscular diseases and their treatments may influence the patient’s ability to cope with infection or its systemic effects.

National neurological associations and neuromuscular networks (Association of British Neurologists, European Reference Network EURO-NMD, others) have produced guidance on the impact of COVID-19 on neurological disorders and their management. These documents define the risk of a severe course of COVID-19 as high or moderately high in all but the mildest forms of NMD. Features conferring a high or very high risk of severe disease include, for example:

  • Muscular weakness of the chest or diaphragm, resulting in respiratory volumes less than 60% predicted (FVC<60%), especially in patients with kyphoscoliosis
  • Use of ventilation via mask or tracheotomy
  • Weak cough and weak airway clearance due to oropharyngeal weakness
  • Presence of tracheostoma
  • Cardiac involvement (and/or on medication for heart involvement)
  • Conditions with a risk of deterioration with fever, fasting or infection (eg. neuromuscular junction or metabolic disorders)
  • Conditions with a risk of rhabdomyolysis with fever, fasting or infection
  • Concomitant diabetes and obesity
  • Patients taking steroids and undergoing immunosuppressant treatment

2.  What do people with NMD need to do to avoid infection?

COVID-19 spreads through droplet infection when an infected person coughs, sneezes or talks, or potentially via touching a surface carrying infectious droplets. People with NMD and a high risk of a severe course of COVID-19 infection, as defined above, should undertake the following precautions:

  • Social distancing of at least 1.5-2 metres (6 feet) is a minimum requirement. For high risk individuals (as defined in 1.), self-isolation is advised. Official advice on how to self-isolate should be followed. Decreasing infection risk may allow gradual de-escalation.
  • People are encouraged to work from home or stagger their working times if possible.
  • Avoid large gatherings and public transport. People in general are urged to limit visits to vulnerable persons.
  • Frequent hand-washing (20 seconds with soap and warm water), use of 60% alcohol-based hand sanitizers, and surface disinfection are crucial.
  • Caregivers should be in-house, if possible. Essential visiting care givers (for instance, providers of backup support for ventilatory assistance) should wear face masks and adequate PPE according to up to date official guidance, to prevent passing on the virus.
  • Visiting physiotherapy is discouraged, however, physiotherapists should provide advice on maintaining physical activity remotely, via phone or videolink. In case a visit is required, an adapted protective setting has to be ensured (Fpp2 mask for the physical therapist and the carer present in the room, surgical mask for the patient, protective clothes, gloves and glasses or helmet should be used by the physical therapist).
  • It is important to be prepared for all eventualities including when assistants are absent due to illness or quarantine. The person responsible for organizing home care should have an overview of the personnel situation at all times. Plans should be made for how to best meet the needs of the individual without resorting to hospitalization.
  • Government advise on protection is regularly updated, and the authors advise patients, carers and medical professionals to follow the up to date recommendations from official websites in their country.

3. What consequences does the risk of COVID-19 infection have for treatments used in people with NMD?

  • Patients must ensure they have an adequate supply of medication and of ventilatory support equipment for a period of prolonged isolation (at least 1month supply).
  • Patients and carers should make use of online and telephone-based pharmacy and equipment ordering and delivery services.
  • Patients and carers need to be comfortable with emergency procedures specific to their condition and their equipment.
  • DMD patients on steroid regimens should continue their medication. Steroids must never be stopped suddenly, and there may be a need to increase the steroid dose when unwell.
  • Immunosuppression in inflammatory muscle disease, myasthenia gravis, and peripheral nerve disease should not be discontinued pre-emptively except under specific circumstances and in consultation with the neuromuscular specialist.
  • Whether and when to start new immunosuppressive treatment may be influenced by how severe the risk of infection is perceived, versus risks of deferring treatment.
  • Isolation requirements may impact on treatment regimens requiring hospital procedures (i.e. nursinersen (Spinraza), alglucosidase alfa (Myozyme), intravenous immunoglobulin (IVIg) and rituximab infusions or treatments related to clinical trials). These treatments should typically not be stopped, but moving treatment to a non-hospital setting should be considered (home-visiting or outreach nurses), for which cooperation with manufacturing companies may be negotiated. IVIg can be changed to subcutaneous immunoglobulin whenever possible. Trial centres should be consulted for advice on clinical trials.

3. What consequences does the risk of COVID-19 infection have for treatments used in people with NMD?

  • Patients must ensure they have an adequate supply of medication and of ventilatory support equipment for a period of prolonged isolation (at least 1month supply).
  • Patients and carers should make use of online and telephone-based pharmacy and equipment ordering and delivery services.
  • Patients and carers need to be comfortable with emergency procedures specific to their condition and their equipment.
  • DMD patients on steroid regimens should continue their medication. Steroids must never be stopped suddenly, and there may be a need to increase the steroid dose when unwell.
  • Immunosuppression in inflammatory muscle disease, myasthenia gravis, and peripheral nerve disease should not be discontinued pre-emptively except under specific circumstances and in consultation with the neuromuscular specialist.
  • Whether and when to start new immunosuppressive treatment may be influenced by how severe the risk of infection is perceived, versus risks of deferring treatment.
  • Isolation requirements may impact on treatment regimens requiring hospital procedures (i.e. nursinersen (Spinraza), alglucosidase alfa (Myozyme), intravenous immunoglobulin (IVIg) and rituximab infusions or treatments related to clinical trials). These treatments should typically not be stopped, but moving treatment to a non-hospital setting should be considered (home-visiting or outreach nurses), for which cooperation with manufacturing companies may be negotiated. IVIg can be changed to subcutaneous immunoglobulin whenever possible. Trial centres should be consulted for advice on clinical trials.

4.  What needs to be done to assure ventilatory services when isolating (LVR bags, home ventilators etc.)

  • Backup and advice hotlines should be offered by the patients’ Neuromuscular Centres.
  • Patients should have an alert card/medical bracelet providing the Neuromuscular Centre contact.
  • Neuromuscular Centres should actively contact patients on ventilatory support to ensure they have relevant information and adequate equipment.

5.  When should people with NMD seek admission if they develop symptoms of infection?

Inpatient admission should be avoided if possible, but should not be delayed when necessary. This can be a difficult decision. People with NMD need to be aware that:

  • Emergency services may be under severe pressure.
  • Individual countries may have triaging procedures in place. These may affect the potential for intensive care admission for people with NMD who require ventilation. Specifically, the terms “incurable” and “untreatable” may be confused by medical staff. Neuromuscular disorders may be incurable, but they are not untreatable, and the implications for treatment decisions are very different.
  • Use of patients’ home equipment (i.e. ventilators) may be prohibited by some hospital infection-control policies, or require modifications. Ideally, there should be a back-up plan.

6.  What applies to immunosuppressive treatment in patients who have suspected or proven COVID-19 infection?

  • The decision to temporarily withhold immunosuppressant medication, or change to a different agent must be made in the individual situation, with the neuromuscular specialist.
  • Steroid treatment should not be withheld or stopped.
  • IVIg, plasma exchanges, and complement inhibitor treatment such as Eculizumab are not expected to affect the risk of COVID-19 infection or of severe disease.

7.  Can treatments for COVID-19 have effects on neuromuscular disease?

  • Numerous specific treatments for COVID-19 are under investigation. Some of these can affect neuromuscular function significantly: for example, chloroquine and azithromycin are unsafe in myasthenia gravis, except when ventilatory support is available. Cardiotoxicity and QT-prolongation though chloroquine and hydroxychloroquine can potentially worsen cardiomyopathy.
  • Other treatments may have effects on specific neuromuscular diseases (in particular, metabolic, mitochondrial, myotonic and neuromuscular junction disorders), and anatomical peculiarities may influence options for treatment (e.g. prolonged prone ventilation)
  • Experimental treatments for COVID-19 may be offered “compassionately”, i.e. outside trial conditions. They should only be taken after consultation with the patient’s neuromuscular specialist.
  • So far, we are not aware of trials of live virus vaccines, where there could be a risk for immunosuppressed patients.

8.  What should neuromuscular specialists do to assist Emergency Medical and Intensive Care decisions on admission to units, escalation of treatment, and ceilings of care in neuromuscular patients?

Decisions on patient admission to Intensive Care may be affected by anticipated or existing capacity problems. Triaging may have been instituted. This can have practical and ethical consequences.

  • There must be close collaboration between neuromuscular and respiratory physicians.
  • The neuromuscular specialist must be available to play a role in ensuring fair provision of intensive care to NMD patients. Patients should not be labelled as “terminal” and triaged for non-treatment simply on the basis of their disability and diagnosis.
  • Ideally, neuromuscular specialists will have involved themselves in formulating hospital policies, decision-making algorithms and documentation forms.
  • Neuromuscular specialists must develop guidelines for treatment that ensure patients remain at home as long as possible.

9.  What patient support should neuromuscular centres provide?

Neuromuscular centres and specialist services should aim to provide the following:

  • Patient hotlines staffed by neuromuscular care advisors, physiotherapists and other specialist personnel, with specialist physician backup (paediatric and adult).
  • Support through routine specialist clinics should be continued through remote monitoring using structured telemedical phone and video links. Multiple, nationally approved platforms are now available with guidance from specialist societies.
  • Many clinical assessments such as swallowing tests can be done remotely by video link.
  • Outreach ventilatory support strategies should be provided.
  • Strategies to maintain hospital-based treatments with minimal disruption.
  • Neuromuscular specialists should be in discussion with their hospitals’ Emergency, Medical and Intensive Care departments on restrictions for use of home NIV equipment.
  • Neuromuscular specialists should support their hospital to define approved devices and ensure their availability (i.e. ICU mask systems with viral particle filters to permit use of patients’ NIV machines in hospital).
  • Liaison and shared care with Intensive Care services.
  • Provide advice on rehabilitation in the home for neuromuscular patients, including Telehealth approaches
  • Facilitation of mask and PPE supply for patients and carers

10. De-escalation of shielding measures – “Déconfinement”

Since the last update of these recommendations, a new discussion is emerging, concerning the safe de-escalation of some aspects of shielding and self-isolation to allow people with neuromuscular disorders to resume social interactions and education, work, or attend scheduled medical appointments.

Currently, there is considerable variation in the way national restrictions and the relaxation of restrictions are evolving, and this impacts on people with neuromuscular conditions, their families and carers, who seek advice from their neuromuscular services.

Despite the range of national approaches to this issue, the WMS agrees on the following considerations regarding risk stratification:

  • For people with neuromuscular disorders who are considered at low risk (see paragraph 1 of the Advice and Position document), i.e. no cardiorespiratory impairment, no immunosuppression, and no significant risk-elevating factors and comorbidities, we suggest the cautious following of local and national guidance. In doubt, consultation with the neuromuscular specialist is recommended.
  • For patients with medium risk, for instance with mild respiratory involvement, we advise a detailed discussion with their neuromuscular specialist, or with the physician responsible for

their neuromuscular care. Controlled relaxation of restrictions, strictly in a secure environment, may be considered, with appropriate caution and taking into account local and national recommendations.

  • Special considerations must remain for people considered at “high” or “very high” risk (see paragraph 1 of the original document), in particular people with severe or unstable respiratory compromise (FVC < 60% predicted); reliance on home ventilation; clinically relevant impairment of heart function; immunosuppression; or severe weakness requiring multiple carers or complex ongoing support. For these patients, measures to avoid infection including self-isolation should remain in place. Carers and family members who are no longer in self- isolation must continue to use masks and barriers when in contact with the person at risk.
  • For children and adolescents with neuromuscular disorders, and their parents, the major question will be whether a return to school and child care centres is acceptable. The safety of children with neuromuscular disorders will also be a concern for the schools and childcare centres these children attend. The decision to return will depend on individual factors, regarding both the individual and institution, but details such as staffing levels and hygiene protection according to national guidelines, will be important. Some recommendations are already available (see References); internationally there is significant variation.
  • Patients also need to be reassured that they can safely attend hospitals for important procedures such as sleep studies, cardiac tests, and initiation of non-invasive ventilation. Neuromuscular specialists need to monitor their patient cohort to detect what medical procedures or monitoring may have been postponed during “lockdown”, and begin arrangements for these services to be safely resumed. Neuromuscular services should ensure that their hospital is making adequate provisions for the safety of people with neuromuscular disorders attending, including staff adequately equipped with personal protection, designated “green” areas in hospitals for non-COVID-19 related treatments, and safe waiting areas and consulting rooms with appropriate distancing between patients and staff.

Further information links:

https://www.theabn.org/page/COVID-19

https://neuromuscularnetwork.ca/news/COVID-19-and-neuromuscular-patients-la-COVID-19-et-les- patients-neuromusculaires/ (updated version April 3rd 2020)

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely- vulnerable-persons-from-COVID-19/guidance-on-shielding-and-protecting-extremely-vulnerable- persons-from-COVID-19

https://www.enmc.org (European Neuromuscular Centre website)

https://www.aanem.org/Practice/COVID-19-guidance (American Association of Neuromuscular and Electrodiagnostic Medicine AANEM website)

https://www.apta.org/telehealth (American Physical Therapy Association advice on telehealth) https://filnemus.fr (French neuromuscular reference centers network)

http://www.filnemus.fr/menu-filiere/evenements/actualites/article/news/les- recommandations-de-filnemus-dans-la-periode-du-

deconfinement/?tx_news_pi1%5Bcontroller%5D=News&tx_news_pi1%5Baction%5D=detai l&cHash=56f89313ee508b50526c7dbfb952dd7a

https://www.nvk.nl/over-nvk/vereniging/dossiers-en-standpunten/covid-19/document-covid- 19?dossierid=26542080

Authors of this document:

Collated by Maxwell S. Damian, PhD, FNCS, FEAN and the members of the Executive Board of the WMS (www.worldmusclesociety.org) in cooperation with members of the Editorial Board of Neuromuscular Disorders, official journal of the WMS

World Muscle Society guidelines on COVID-19 for NMD community

For update 20.4.2020 follow this link

(for translations visit https://ern-euro-nmd.eu/covid-19-and-people-with-neuromuscular-disorders-world-muscle-society-position-and-advice/ )

The category of neuromuscular disease (NMD) covers a wide range of different diagnoses with widely varying levels of disability even in people with the same diagnosis. It is difficult, therefore to make specific recommendations that apply generally. The following are recommendations that apply to numerous neuromuscular disorders. These recommendations are designed primarily for patients, carers, general neurologists and non-specialist medical providers. They are also intended to inform neuromuscular specialists particularly regarding frequently asked questions and basic service requirements. In-depth reference links are provided.

1. Are people with neuromuscular disease (NMD) at higher risk?

National neurological associations and neuromuscular networks (Association of British Neurologists, European Reference Network EURO-NMD, others) have produced guidance on the impact of Covid-19 on neurological disorders and their management.  These documents define the risk of a severe course of Covid-19 as high or moderately high in all but the mildest forms of NMD. Features conferring a high or very high risk of severe disease include, for example:

  • Muscular weakness of the chest or diaphragm, resulting in respiratory volumes less than 60% predicted (FVC<60%), especially in patients with kyphoscoliosis
  • Use of ventilation via mask or tracheotomy
  • Weak cough and weak airway clearance due to oropharyngeal weakness
  • Presence of tracheostoma
  • Cardiac involvement (and/or on medication for heart involvement)
  • Risk of deterioration with fever, fasting or infection
  • Risk of rhabdomyolysis with fever, fasting or infection
  • Concomitant diabetes and obesity
  • Patients taking steroids and/or undergoing immunosuppressant treatment

2. What do people with NMD need to do to avoid infection?

Covid-19 spreads through droplet infection when an infected person coughs, sneezes or talks, or potentially via touching a surface carrying infectious droplets. People with NMD and a high risk of a severe course of Covid-19 infection, as defined above, should undertake the following precautions:

  • Social distancing of at least 2 metres (6 feet) is a minimum requirement. For high risk individuals (as defined in 1.), self-isolation is advised. Official advice on how to self-isolate should be followed.
  • People are encouraged to work from home or stagger their working times if possible.
  • Avoid large gatherings and public transport. People in general are urged to limit visits to vulnerable persons.
  • Frequent hand-washing (20 seconds with soap and warm water), use of 60% alcohol-based hand sanitizers, and surface disinfection are crucial.
  • Caregivers should be in-house, if possible. Essential visiting care givers (for instance, providers of backup support for ventilatory assistance) should wear face masks and adequate PPE according to up to date official guidance, to prevent passing on the virus.
  • Visiting physiotherapy is discouraged, however, physiotherapists should provide advice on maintaining physical activity remotely, via phone or videolink.
  • It is important to be prepared for all eventualities including when assistants are absent due to illness or quarantine. The person responsible for organizing home care should have an overview of the personnel situation at all times. Plans should be made for how to best meet the needs of the individual without resorting to hospitalization.
  • Government advise on protection is regularly updated, and the authors advise patients, carers and medical professionals to follow the up to date recommendations from official websites in their country.

3. What consequences does the risk of Covid-19 infection have for treatments used in people with NMD?

  • Patients must ensure they have an adequate supply of medication and of ventilatory support equipment for a period of prolonged isolation (at least 1month supply).
  • Patients and carers should make use of online and telephone-based pharmacy and equipment ordering and delivery services.
  • Patients and carers need to be comfortable with emergency procedures specific to their condition and their equipment.
  • DMD patients on steroid regimens should continue their medication. Steroids must never be stopped suddenly, and there may be a need to increase the steroid dose when unwell.
  • Immunosuppression in inflammatory muscle disease, myasthenia gravis, and peripheral nerve disease should not be discontinued except under specific circumstances and in consultation with the neuromuscular specialist.
  • Isolation requirements may impact on treatment regimens requiring hospital procedures (i.e. nursinersen (Spinraza), alglucosidase alfa (Myozyme), intravenous immunoglobulin (IVIg) and rituximab infusions or treatments related to clinical trials).These treatments should typically not be stopped, but whenever possible moved to a non-hospital setting (home-visiting or outreach nurses), for which cooperation with manufacturing companies may be negotiated. IVIg can be changed to subcutaneous immunoglobulin whenever possible. Trial centres should be consulted for advice on clinical trials.

4. What needs to be done to assure ventilatory services when isolating (LVR bags, home ventilators etc.)

  • Backup and advice hotlines should be offered by the patients’ Neuromuscular Centres.
  • Patients should have an alert card/medical bracelet providing the Neuromuscular Centre contact.
  • Neuromuscular Centres should actively contact patients on ventilatory support to ensure they have relevant information and adequate equipment.

5. When should people with NMD seek admission if they develop symptoms of infection?

Inpatient admission should be avoided if possible, but should not be delayed when necessary. This can be a difficult decision. People with NMD need to be aware that:

  • Emergency services may be under severe pressure.
  • Individual countries may have triaging procedures in place. These may affect the potential for intensive care admission for people with NMD who require ventilation. Specifically, the terms “incurable” and “untreatable” may be confused by medical staff. Neuromuscular disorders may be incurable, but they are not untreatable, and the implications for treatment decisions are very different.
  • Use of patients’ home equipment (i.e. ventilators) may be prohibited by some hospital infection-control policies, or require modifications. Ideally, there should be a back-up plan.

6. Can treatments for Covid-19 have effects on neuromuscular disease?

  • Numerous specific treatments for Covid-19 are under investigation. Some of these can affect neuromuscular function significantly: for example, chloroquine and azithromycin are unsafe in myasthenia gravis, except when ventilatory support is available.
  • Other treatments may have effects on specific neuromuscular diseases (in particular, metabolic, mitochondrial, myotonic and neuromuscular junction disorders), and anatomical peculiarities may influence options for treatment (e.g. prolonged prone ventilation)
  • Experimental treatments for Covid-19 may be offered “compassionately”, i.e. outside trial conditions. They should only be taken after consultation with the patient’s neuromuscular specialist.

7. What should neuromuscular specialists do to assist Emergency Medical and Intensive Care decisions on admission to units, escalation of treatment, and ceilings of care in neuromuscular patients?

Decisions on patient admission to Intensive Care may be affected by anticipated or existing capacity problems. Triaging may have been instituted. This can have practical and ethical consequences.

  • There must be close collaboration between neuromuscular and respiratory physicians.
  • The neuromuscular specialist must be available to play a role in ensuring fair provision of intensive care to NMD patients.
  • Ideally, neuromuscular specialists will have involved themselves in formulating hospital policies, decision-making algorithms and documentation forms.
  • Neuromuscular specialists must develop guidelines for treatment that ensure patients remain at home as long as possible.

8. What patient support should neuromuscular centres provide?

Neuromuscular centres and specialist services should aim to provide the following:

  • Patient hotlines staffed by neuromuscular care advisors, physiotherapists and other specialist personnel, with specialist physician backup (paediatric and adult).
  • The possibility to continue routine clinics by structured telemedical phone and video links (for this, national and institutional data security regulations such as HIPPA approval may need modification).
  • Outreach ventilatory support strategies should be provided.
  • Strategies to maintain hospital-based treatments with minimal disruption.
  • Neuromuscular specialists should be in discussion with their hospitals’ Emergency, Medical and Intensive Care departments on restrictions for use of home NIV equipment.
  • Neuromuscular specialists should support their hospital to define approved devices and ensure their availability (i.e. ICU mask systems with viral particle filters to permit use of patients’ NIV machines in hospital).
  • Liaison and shared care with Intensive Care services.

Further information:

Documents are available at 

https://www.theabn.org/page/COVID-19

https://neuromuscularnetwork.ca/news/covid-19-and-neuromuscular-patients-la-covid-19-et-les-patients-neuromusculaires/

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

European Neuromuscular Centre website: www.enmc.org

Authors of this document:

Collated by

Maxwell S. Damian, PhD, FNCS, FEAN

The Members of the Board of the WMS (www.worldmusclesociety.org)

The members of the Editorial Board of Neuromuscular Disorders, official journal of the WMS March 28th 2020 1600

Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19

Background and scope of guidance

This guidance is for people, including children, who are at very high risk of severe illness from coronavirus (COVID-19) because of an underlying health condition, and for their family, friends and carers. It is intended for use in situations where the extremely vulnerable person is living in their own home, with or without additional support. This includes the extremely clinically vulnerable people living in long-term care facilities, either for the elderly or persons with special needs.

Shielding is a measure to protect people who are clinically extremely vulnerable by minimising all interaction between those who are extremely vulnerable and others. We are strongly advising people with serious underlying health conditions (listed below), which put them at very high risk of severe illness from coronavirus (COVID-19), to rigorously follow shielding measures in order to keep themselves safe.

What do we mean by extremely vulnerable?

People falling into this extremely vulnerable group include:

  1. Solid organ transplant recipients.
  2. People with specific cancers:
    • people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
    • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
    • people having immunotherapy or other continuing antibody treatments for cancer
    • people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
    • people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
  3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
  4. People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
  5. People on immunosuppression therapies sufficient to significantly increase risk of infection.
  6. Women who are pregnant with significant heart disease, congenital or acquired.

Shielding is for your personal protection. It is your choice to decide whether to follow the measures we advise. Individuals who have been given a prognosis of less than 6 months to live, and some others in special circumstances, could decide not to undertake shielding. This will be a deeply personal decision. We advise calling your GP or specialist to discuss this.

If you think you fall into one of the categories of extremely vulnerable people listed above, you should discuss your concerns with your GP or hospital clinician.

We understand this is an anxious time and people considered extremely vulnerable will understandably have questions and concerns. Plans are being readied to make sure you can rely on a wide range of help and support.

What you need to know

If you have an underlying health condition listed above, you are at very high risk of severe illness as a result of coronavirus (COVID-19) requiring admission to hospital.

Shielding is a practice used to protect extremely vulnerable people from coming into contact with coronavirus.

You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least several weeks. Please note that this period of time could change.

Visits from people who provide essential support to you such as healthcare, personal support with your daily needs or social care should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19). You may find this guidance on home care provision useful. All people coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there.

You should have an alternative list of people who can help you with your care if your main carer becomes unwell. You can also contact your local council for advice on how to access care.

If you think you have developed symptoms of COVID-19 such as a new, continuous cough or fever, seek clinical advice. Do this as soon as you get symptoms.

If you have someone else living with you, they are not required to adopt these protective shielding measures for themselves. They should do what they can to support you in shielding and they should stringently follow guidance on social distancing, reducing their contact outside the home. If you care for but don’t actually live with someone who is extremely vulnerable, you should still stringently follow guidance on social distancing.

How do these measures differ from the social distancing guidance for vulnerable people issued?

You are strongly advised to stay at home at all times and avoid any face-to-face contact for a period of at least 12 weeks.

People who are not clinically extremely vulnerable who have contracted coronavirus (COVID-19) and recovered will be able to go about their normal business.

Symptoms

The most common symptoms of coronavirus (COVID-19) are recent onset of:

  • new continuous cough and/or
  • high temperature (above 37.8 °C)

What is shielding?

Shielding is a measure to protect extremely vulnerable people by minimising interaction between those who are extremely vulnerable and others. This means that those who are extremely vulnerable should not leave their homes, and within their homes should minimise all non-essential contact with other members of their household. This is to protect those who are at very high risk of severe illness from coronavirus (COVID-19) from coming into contact with the virus.

If you think you have a condition which makes you extremely vulnerable you are strongly advised to shield yourself, to reduce the chance of getting coronavirus (COVID-19) and follow the face-to-face distancing measures below.

The measures are:

  1. Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
  2. Do not leave your house.
  3. Do not attend any gatherings. This includes gatherings of friends and families in private spaces, for example, family homes, weddings and religious services.
  4. Do not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
  5. Keep in touch using remote technology such as phone, internet, and social media.

Do use telephone or online services to contact your GP or other essential services.

We know that stopping these activities will be difficult. You should try to identify ways of staying in touch with others and participating in your normal activities remotely from your home. However, you must not participate in alternative activities if they involve any contact with other people.

This advice will be in place for at least 12 weeks.

What should you do if you have someone else living with you?

While the rest of your household are not required to adopt these protective shielding measures for themselves, we would expect them to do what they can to support you in shielding and to stringently follow guidance on social distancing.

  1. Minimise as much as possible the time other family members spend in shared spaces such as kitchens, bathrooms and sitting areas, and keep shared spaces well ventilated.
  2. Aim to keep 2 metres (3 steps) away from people you live with and encourage them to sleep in a different bed where possible. If you can, you should use a separate bathroom from the rest of the household. Make sure you use separate towels from the other people in your house, both for drying themselves after bathing or showering and for hand-hygiene purposes.
  3. If you do share a toilet and bathroom with others, it is important that they are cleaned after use every time (for example, wiping surfaces you have come into contact with). Another tip is to consider drawing up a rota for bathing, with you using the facilities first.
  4. If you share a kitchen with others, avoid using it while they are present. If you can, you should take your meals back to your room to eat. If you have one, use a dishwasher to clean and dry the family’s used crockery and cutlery. If this is not possible, wash them using your usual washing up liquid and warm water and dry them thoroughly. If you are using your own utensils, remember to use a separate tea towel for drying these.
  5. We understand that it will be difficult for some people to separate themselves from others at home. You should do your very best to follow this guidance and everyone in your household should regularly wash their hands, avoid touching their face, and clean frequently touched surfaces.

If the rest of your household stringently follow advice on social distancing and minimise the risk of spreading the virus within the home by following the advice above, there is no need for them to also shield alongside you.

Handwashing and respiratory hygiene

There are general principles you should follow to help prevent the spread of airway and chest infections caused by respiratory viruses, including:

  • wash your hands more often – with soap and water for at least 20 seconds or use a hand sanitiser. Do this after you blow your nose, sneeze or cough, and after you eat or handle food
  • avoid touching your eyes, nose, and mouth with unwashed hands
  • avoid close contact with people who have symptoms
  • cover your cough or sneeze with a tissue, then throw the tissue in a bin
  • clean and disinfect frequently touched objects and surfaces in the home

What should you do if you develop symptoms of coronavirus (COVID-19)?

If you develop symptoms of COVID-19 (high temperature above 37.8 °C and/or new and continuous cough), seek clinical advice. Call emergency if you are seriously ill. Do not visit the GP, pharmacy, urgent care centre or a hospital. Do this as soon as you get symptoms.

How can you get assistance with foods and medicines if you are shielding?

Ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities and the general public are gearing up to help those advised to stay at home. Please discuss your daily needs during this period of staying at home with carers, family, friends, neighbours or local community groups to see how they can support you.

The government is helping pharmacies to deliver prescriptions. Prescriptions will continue to cover the same length of time as usual. If you do not currently have your prescriptions collected or delivered, you can arrange this by:

  1. Asking someone who can pick up your prescription from the local pharmacy (this is the best option, if possible).
  2. Contacting your pharmacy to ask them to help you find a volunteer (who will have been ID checked) or deliver it to you.

You may also need to arrange for collection or delivery of hospital specialist medication that is prescribed to you by your hospital care team.

If you receive support from health and social care organisations, for example, if you have care provided for you through the local authority or health care system, this will continue as normal. Your health or social care provider will be asked to take additional precautions to make sure that you are protected. The advice for formal carers is included in the home care provision.

What should you do if you have hospital and GP appointments during this period?

We advise everyone to access medical assistance remotely, wherever possible. However, if you have a scheduled hospital or other medical appointment during this period, talk to your GP or specialist to ensure you continue to receive the care you need and determine which of these appointments are absolutely essential.

It is possible that your hospital may need to cancel or postpone some clinics and appointments. You should contact your hospital or clinic to confirm appointments.

What is the advice for visitors, including those who are providing care for you?

Contact regular visitors to your home, such as friends and family to let them know that you are shielding and that they should not visit you during this time unless they are providing essential care for you. Essential care includes things like help with washing, dressing or feeding.

If you receive regular health or social care from an organisation, either through your local authority or paid for by yourself, inform your care providers that you are shielding and agree a plan for continuing your care.

If you receive essential care from friends or family members, speak to your carers about extra precautions they can take to keep you safe. You may find this guidance on home care provision useful.

Speak to your carers about backup plans for your care in case your main carer is unwell and needs to self-isolate. If you need help with care but you’re not sure who to contact, or if you do not have family or friends who can help you, you can contact your local council who will be able to help you and assess any social care needs you might have.

What is the advice for informal carers who provide care for someone who is extremely vulnerable?

If you are caring for someone who is extremely vulnerable due to severe illness from COVID-19, there are some simple steps that you can take to protect them and to reduce their risk at the current time. Ensure you follow advice on good hygiene:

  • only care that is essential should be provided
  • wash your hands on arrival and often, using soap and water for at least 20 seconds or use hand sanitiser
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin immediately and wash your hands afterwards
  • do not visit or provide care if you are unwell and make alternative arrangements for their care
  • provide information on who they should call if they feel unwell
  • find out about different sources of support that could be used
  • look after your own wellbeing and physical health during this time. Further information on this is available.

How do you look after your mental wellbeing?

Social isolation, reduction in physical activity, unpredictability and changes in routine can all contribute to increasing stress. Many people including those without existing mental health needs may feel anxious about this impact including support with daily living, ongoing care arrangements with health providers, support with medication and changes in their daily routines.

If you are receiving services for your mental health, learning disability or autism and are worried about the impact of isolation please contact your key worker or care coordinator or provider to review your care plan. If you have additional needs please contact your key worker or care coordinator to develop a safety or crisis plan.

Understandably, you may find that shielding and distancing can be boring or frustrating. You may find your mood and feelings are affected and you may feel low, worried or have problems sleeping and you might miss being outside with other people.

At times like these, it can be easy to fall into unhealthy patterns of behaviour which in turn can make you feel worse. There are simple things you can do that may help, to stay mentally and physically active during this time such as:

  • look for ideas of exercises you can do at home on the NHS website
  • spend time doing things you enjoy – this might include reading, cooking, other indoor hobbies or listening to favourite radio programmes or watching TV
  • try to eat healthy, well-balanced meals, drink enough water, exercise regularly, and try to avoid smoking, alcohol and drugs
  • try spending time with the windows open to let in the fresh air, arranging space to sit and see a nice view (if possible) and get some natural sunlight, or get out into any private space, keeping at least 2 metres away from your neighbours and household members if you are sitting on your doorstep

Constantly watching the news can make you feel more worried. If you think it is affecting you, try to limit the time you spend watching, reading, or listening to media coverage of the outbreak. It may help to only check the news at set times or limit this to a couple of times a day.

Try to focus on the things you can control, such as your behaviour, who you speak to and who you get information from. Every Mind Matters provides simple tips and advice to start taking better care of your mental health.

What steps can you take to stay connected with family and friends during this time?

Draw on support you might have through your friends, family and other networks during this time. Try to stay in touch with those around you over the phone, by post or online. Let people know how you would like to stay in touch and build that into your routine. This is also important in looking after your mental wellbeing and you may find it helpful to talk to them about how you are feeling if you want to.

Remember, it is okay to share your concerns with others you trust and in doing so you may end up providing support to them, too.

What is the advice for people living in long-term care facilities, either for the elderly or persons with special needs?

The advice above also applies to extremely vulnerable persons living in long-term care facilities. Care providers should carefully discuss this advice with the families, carers and specialist doctors caring for such persons to ensure this guidance is strictly adhered to.

What is the advice for parents and schools with extremely vulnerable children?

The advice above also applies to extremely vulnerable children in mainstream and special schools.


RESOURCE: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19


You may also be interested in:

A discussion about guarding mental health during the COVID-19 pandemic.

Coronavirus (COVID-19) information for people with NMD

As there are currently no guidelines available for people with NMD on Coronavirus (COVID-19), we would like to share some general information on the disease with focus on some NMD specific diseases. People with special health care needs, especially those with immune or neuromuscular problems, or with chronic illnesses, such as asthma, diabetes, or cancer, might be more likely to have complications from COVID-19. They might need to avoid crowds or large gatherings more than other people. As the development of the disease and situation on the COVID-19 changes very quickly, some of the materials provided might change in the future.

VIDEO SECTION

A) General info about Coronavirus (COVID-19)

What is Coronavirus (COVID-19)?


How to protect yourself against COVID-19?


COVID-19 (Coronavirus Disease 19) March Update- causes, symptoms, diagnosis, treatment, pathology


DISEASE RELATED SECTIONS

B) COVID-19 Recommendations for the Neuromuscular Community

COVID-19 Resources



C) COVID-19 and SMA (Spinal muscular atrophy)


D) COVID-19 and DMD (Duchenne muscular dystrophy)

WDO Webinar: COVID-19 and Duchenne & Becker muscular dystrophy


WDO webinar on COVID-19 report

https://www.worldduchenne.org/wp-content/uploads/covid-19-webinar-english.pdf


15 THINGS WE KNOW SO FAR about COVID-19 for people affected by Duchenne or Becker

https://www.worldduchenne.org/wp-content/uploads/wdo_covid19_15-things-english.pdf


Coronavirus (COVID-19) advice for DMD community


DMD Pathfinders statement regarding Coronavirus (COVID-19)

Pathfinders statement


E) National information resources for the public on COVID-19

https://www.ecdc.europa.eu/en/novel-coronavirus-china/sources-updated


F) EPF Statement on the COVID-19

https://www.eu-patient.eu/News/News/epf-statement-on-the-covid-19-pandemic/


G) A message from EURORDIS regarding the Covid-19 pandemic

https://download2.eurordis.org/documents/pdf/EURORDISStatement_COVID19.pdf

7th EC meeting 2019 in Izola, Slovenia

We are organizing an extended EAMDA executive committee (EC) meeting between October 18 and 20, 2019, at the Rehabilitation Center in Izola, Slovenia.

The topic of the meeting will be related to the AGA in 2020, the construction of educational programs for people with NMD and the substantive preparation of EAMDA strategic development guidelines for the next five years. The goal of all planned activities is to connect and educate members and people with NMD, which directly or indirectly improve their health status and thus increase the quality of life of people with NMD. The meeting will be attended by members of the EC and representatives of the visiting countries.

Program of the meeting is available for download HERE.