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Coronavirus (Covid-19): Guidance for people affected with ME/CFS - UPDATE (30 June)

30/6/2020

 
Latest Free Leaflet Update: Covid-19 and ME/CFS by Dr Charles Shepherd. 
This week, the ME Association (MEA) issued an update to their general leaflet on Covid-19 and ME/CFS.  This 12 page leaflet is part of a range of leaflets the MEA have made freely available during this unprecedented crisis. The MEA hope they will continue to provide help and reassurance and will keep updating them as necessary.
The detailed leaflet covers -
Controlling the spread of the virus;  Hand and Respiratory Hygiene;  Vaccine Development;  Testing for the virus;  What to do if you have symptoms suggestive of coronavirus infection;  Shopping - Food and Medicines;  Employment Government Guidance: The vulnerable and extremely vulnerable;  ME/CFS Research Progress on the new NICE clinical guideline on ME/CFS ;  Can pets transmit the infection?;  Possible forms of treatment;  What should people with ME/CFS do if they catch Cv19?;  Face Masks;  What should previously healthy people do if they experience symptoms suggestive of post infectious fatigue and/or ME/CFS?;  Hospital based referral services for ME/CFS
 
The MEA’s recent Covid-19 leaflets and letters are all available to download,
  1. 12 page Covid-19 and ME/CFS Weekly Update -
  2. 4 page MEA information on Reducing the risk of infection -  Reducing the risk of catching Coronavirus if you have ME/CFS leaflet by Dr Charles Shepherd.
  3. 8 page MEA information on PVF / PVFS / ME / CFS following Covid-19 Infection - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.  
  4. MEA statement, signed by Dr Charles Shepherd, in Letter: Asserting your vulnerable status.
  5. 4 page MEA detailed leaflet on Benefits - Your Benefits during the Coronavirus Crisis. 
  6. MEA Employment Guidance: Key points on Employment, ME/CFS and the Coronavirus.  
Action for ME (AfME) have a 'Coronavirus and M.E./CFS' page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
#MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME. 
 
The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.
  • Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
  • Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
    Coronavirus and members of the 25% ME Group
 
Local Information
 
Worcestershire Health & Care NHS Trust. 
COVID19 (coronavirus) - Information if attending an appointment
From Monday, 15th June 2020 if you are coming to any of our hospitals, inpatient wards or clinics it is important that you wear a face covering at all times.  The website gives full information.
 
Healthwatch Worcestershire’s Covid-19 Survey
Healthwatch Worcestershire is asking local residents to share their views during the Coronavirus Covid-19 outbreak. They have launched a survey to gather feedback about information available in relation to Covid-19 and experiences of accessing local health and social care services at this time.
The survey can be completed online via Healthwatch Worcestershire’s website - www.healthwatchworcestershire.co.uk/covid-19-survey/. You can also contact them directly for further information, paper copies of the survey, or to share any experience of local health and social care services -info@healthwatchworcestershire.co.uk or 01386 550264.
 
Healthwatch Worcestershire was established as the independent consumer champion - giving the public, patients and users of health and social care services in Worcestershire a voice. 
 

The Worcestershire County Council: Covid-19 Information. 

Coronavirus (COVID-19) Outbreak Control Plan (First issued on 30 June. available on their main Covid-19 page)
As part of the next phase of the national response to the COVID-19 pandemic, Worcestershire County Council is required to produce and deliver a Local Outbreak Control Plan. The plan details how Worcestershire County Council and its partners will prevent and respond to any outbreaks and incidents of COVID-19 in Worcestershire.
To minimize local outbreaks, we need everyone to play their part. By continuing to follow the social distancing guidance, practicing good hand hygiene and testing and isolating when necessary, we can all keep ourselves and everyone safe.
(This section amended on 1 July 2020)

Dr Kathryn Cobain, Director of Public Health in Worcestershire, explains how the R rates are calculated nationally and regionally, and that data is drawn from many official sources and the process is complex and robust.  Here in Worcestershire, we fall under the Midlands region for this data, and this includes a very large area, across the East and West Midlands. It is not possible to calculate a meaningful R rate at a very local level, for example in cities such as Worcester. An R rate even at County level would not be a reliable and robust interpretation of the data.
This is because the data gathered is at such low numbers that even a minor change can create a disproportionate difference. Locally we review a multitude of early warning indicators, and look for signs of change. We continue to monitor the situation closely to ensure the safety of our residents.
 
Take care, and stay safe everyone.

Coronavirus (Covid-19): Guidance for people affected with ME/CFS - UPDATE (9 June)

9/6/2020

 
Coronavirus (Covid-19): Guidance for people affected with ME/CFS - UPDATE (9 June).  
 
New ME Association Guidance: Key points on Employment, ME/CFS and the Coronavirus.  
 
Extracts from the MEA’s new six page downloadable leaflet written by Dr Charles Shepherd.
At present we don’t know whether people with ME/CFS are more likely to catch coronavirus or to develop serious respiratory complications if they do.  What we do know is that they are at increased risk of an exacerbation of ME/CFS symptoms, or a relapse of their ME/CFS, if they catch a serious viral infection like the coronavirus.  People with ME/CFS should therefore be considered ‘vulnerable’ whose health is likely to be exacerbated by Covid-19 infection and they should be stringently practising the social distancing measures outlined by the Government.
 
ME/CFS is not one of the conditions that is listed in the new ‘extremely vulnerable’ category that covers people who are likely to develop very serious respiratory complications if they catch the covid-19 infection  -  But if you have ME/CFS and other conditions as well - which include cancer, organ transplantation, immune deficiency diseases and the use of immunosuppressive drugs such as oral steroids - then you need to continue to self-isolate for 12 weeks and clearly cannot physically go to work.
 
Key Points on Employment, ME/CFS and the Coronavirus covered in the leaflet
Statutory Sick Pay (SSP)
Furloughed Workers
If you are Self-Employed
Employers must ensure the workplace is safe
Returning to Work Risk Assessments
Individual risk factors
Risk factors at work
Reducing the risk at work
 
All of the MEA’s Covid-19 leaflets and letters are available to download from our 21 May update.
 
Action for ME (AfME) have a ‘Coronavirus and M.E./CFS’ page - which has been set up to keep track of up-to-date advice regarding Coronavirus, and support available from Action for M.E.  AfME are monitoring this page, and it gives the time when it was last updated.
 
AfME explain Lockdown and social distancing
From Monday 1 June, lockdown is easing for people in England. You can spend time outdoors, including private gardens and other outdoor spaces, in groups of up to six people from different households, following social distancing guidelines. Those considered at increased risk of severe illness from Coronavirus (including those with underlying conditions, such as M.E. - see "Essential advice" above) continue to be advised to "stay at home as much as possible and, if you do go out, take particular care to minimise contact with others outside your household." See section 9. Clinically vulnerable people of the guidance for Staying alert and safe (social distancing).
 
AfME’s Essential Advice
It remains essential that people with M.E. follow existing advice about social distancing “to reduce social interaction between people in order to reduce the transmission of Coronavirus.”  It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. If you live in a residential care setting, other guidance is available.
 
#MEAction continue to add information to their Covid-19 Resources page, giving information about the coronavirus outbreak and its effect on people with ME. It includes links to useful governmental sites regarding the outbreak as well as resources and articles particularly developed for people with ME.  https://www.meaction.net/covid-19/
 
The 25% M.E. Group has leaflets available to download for people with severe M.E. on its website.
  • Message from Dr Willy Weir and Dr Nigel Speight, Medical Advisor to the 25% ME Group - Coronavirus Update 7 March
  • Message from Dr Nigel Speight, Medical Advisor to the 25% ME Group
    Coronavirus and members of the 25% ME Group
 
Take care, and stay safe everyone.

The APPG on ME Focus on Young People

8/6/2020

 
10.00 am, Tuesday 16 June - All-Party Parliamentary Group (APPG) on ME Meeting.
 
The ME Association (MEA) announce that the APPG on ME will be Focusing on Young People when they meet virtually next week. 
 
This meeting will cover issues relating to children and adolescents with ME/CFS - including diagnosis, medical management, education, inappropriate social services interventions.  There will be three presentations from:
  • Dr Nigel Speight - Consultant Paediatrician and Medical Adviser to The ME Association and TYMES Trust
  • Tony Crouch - Paediatric social worker and social work adviser to TYMES Trust, 25% ME Group, Hope 4 ME and Fibro NI. 
  • A parent of a child with ME
The presentations will be followed by discussion and questions from MPs.
 
Please email your own MP and ask that they attend this important meeting.  Please ask your MP to contact the APPG on ME Chair, Carol Monaghan MP for details on how to join. Contact details for all Worcestershire MPs. 
 
All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME)
Purpose - To seek to improve health, social care, education and employment opportunities for ME sufferers and encourage biomedical research into the cause and treatment of ME.
 
Background:
  • 2019 Parliamentary briefing paper on key issues facing people with ME.
  • Commons M.E. Debate, 24 January. Transcripts, YouTube and Reports.

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