Despite being extra unwell with Covid19/Long Covid myself, I have been beavering away in the background (as much as my weary M.E-slammed body would allow) to try and make ‘the powers that be’ as aware as possible that Covid19 had the potential to cause chronic illness in many people during a pandemic…..any pandemic.
My own Covid19 symptoms started on 23rd March 2020, the same day as the UK lockdown was announced. I had ‘acute’ symptoms for around a month but as soon as I was physically able to ‘get back to work’ for an hour or so, I got back to my URGENT advocacy work. From my bed, with very limited energy and brain functionality.
Imagine how frustrating it is for me that I only received a reply to one of those URGENT emails TODAY (sent at the end of April 2020).
Remember, when I sent this email, the term ‘Long Covid’ didn’t exist, the subsets of Covid19 were not yet known, and I was simply using my prior knowledge and experience of M.E to ‘educate’ others as to the possibility of chronic illness as an outcome of Covid19.
Here is the email I sent to both Penny Mordaunt MP (Portsmouth North) and Stephen Morgan MP (Portsmouth South), both have supported my M.E work in various ways over recent years.
I wanted to bring this to your attention much sooner but have been recovering from my own personal experience of Covid-19. 5 weeks of being extra ill and I’m only just starting to resurface, albeit with very painful and poorly functioning lungs.I’m not sure if you are aware that Covid-19 is ‘highly likely’ to trigger M.E/C.F.S in a percentage of patients. It is known that around 10% of all virus cases develop Post-Viral Fatigue Syndrome. A percentage of those patients will go on to develop M.E/C.F.S.Previous Coronaviruses SARS and MERS are known to have triggered M.E/C.F.S.The M.E/C.F.S ‘process’In the majority of cases M.E/C.F.S is triggered by a virus. The patient has a virus, goes on to get Post-Viral Fatigue Syndrome, and if symptoms persist for over 3 months a diagnosis of M.E/C.F.S is considered. A diagnosis of M.E/C.F.S is given at the 6-month point IF the patient meets the criteria for M.E/C.F.S.The global M.E/C.F.S scientific community are already working on the link between Covid-19 and M.E/C.F.S. Unfortunately, we cannot definitively state that Covid-19 triggers M.E/C.F.S until diagnoses start to rise in the months to come. Charities are anticipating a spike in need for their services within the next year. As you can see from the information above, that will take a minimum of 6 months. The average length of time to get a diagnosis is a year but many patients don’t receive a diagnosis for 2-3 years after symptoms onset.The only way to avoid Post-Viral Fatigue Syndrome evolving into M.E/C.F.S is to rest. I have been posting that preventative message across social media for the past month or so.I need your help to get that message heard. Unfortunately, Physiotherapists will be encouraging activity in order to get the patient back to ‘normal health’. This is the opposite of any advice recommended by M.E/C.F.S charities for people going through Post-Viral Fatigue Syndrome. An organisation called Physios4ME are working hard to educate Physiotherapists nationwide about appropriate ‘rehab’ exercises for people with PVFS but they will struggle to reach every department in time.The UK already has 350,000 M.E/C.F.S patients (the official figure is 250,000+ but it is a 10-year-old statistic and the patient community grows by at least 9000 patients each year), and the potential for this figure to grow exponentially is worrying. In Portsmouth, I estimate that we have at least 6oo patients at the moment, that figure is likely to increase. M.E/C.F.S affected 1:500 pre-Covid-19.I hope you can help to spread the ‘rest is best’ message.Best wishes and stay safe, Sally.
Did I not stress the urgency? Was I not clear in that this was a problem that needed to be dealt with NOW? Here is the generic email I received from Stephen Morgan’s team on 18th June 2020 –
Dear Sally Callow,
Thank you for contacting me regarding your concerns for those who may develop ME as a result of the Covid-19 illness.
Firstly, I just want to say that I hope you and your family are safe and well at such a challenging time for our city and country.
I appreciate you giving me a little more time than usual to get back to you. The number of people getting in touch with me has more than trebled as a result of Covid-19 and this public health emergency. I therefore am grateful for your patience.
As you are aware, some time has passed since your original correspondence, but I hope I have gone some way in already acting on your views. I appreciate things have been moving on very quickly during this crisis, as services respond and Government listen to our concerns. If there are specific issues or actions which remain, please do get in touch again.
In doing so please let me know exactly what problem now is and the way in which you would like me to help.
Stephen Morgan MP
Member of Parliament for Portsmouth South
Shadow Minister for the Armed Forces
I replied to their email and thanked them for their generic reply.
Penny Mordaunt’s team forwarded my email to the Department of Health and Social Care within two days of receipt so I am happy with the way they dealt with my concerns. I have since also talked to Penny Mordaunt about the psychologicalisation of Long Covid, her support is ongoing. Her staff added my email (as a priority) to my ongoing correspondence with the DHSC (that pile is getting thick now!).
To be honest, my head has been so full with advocacy and social enterprise-related stuff I hadn’t given my original email another thought. Particularly as there were growing numbers of Long Covid advocates taking part in Parliamentary meetings and APPGs. I continued doing ground level support and turned my attention to my local council and how they could support local people with M.E/C.F.S and/or Long Covid as a result of Covid19.
I received this PDF document, forwarded to me from Penny Mordaunt MP’s team.
Thank you for your correspondence of 5 May on behalf of your constituent, Ms Sally
Callow, about long COVID.
I appreciate Ms Callow’s concerns.
The NHS and the Department are currently working to better understand COVID-19,
including the severity and duration of symptoms, the long-term effects and effective
treatments. As Ms Callow will be aware, some people who have had the virus may have
ongoing health problems that could include breathlessness, fatigue, muscle and joint pain,
anxiety, and memory and concentration problems.
The National Institute for Health Research (NIHR) launched a UK-wide ‘recovery and
learning’ call to fund research on long-term recovery from COVID-19. Further information
and details of the grants can be found at www.nihr.ac.uk by searching for ‘funding longer
term recovery and learning research’ and ‘COVID studies’.
The NIHR, in collaboration with the UK Research Institute, launched a further joint
research call to fund comprehensive research into the longer-term physical and mental
effects of COVID-19 in non-hospitalised individuals. The NIHR Centre for Evidence and
Dissemination recently published a dynamic review of the evidence on ongoing COVID-19
symptoms, which can be found at evidence.nihr.ac.uk/themedreview/living-with-covid19.
Dr Kiren Collison, Deputy Medical Director of Primary Care for NHS England and NHS
Improvement (NHSE&I), is the Chair of the Long-COVID Taskforce. The Taskforce will
advise on delivery of the NHS Long-COVID Plan, announced on 7 October, to ensure a
broad, collaborative approach to supporting people with long COVID. It also implements
the NHS five-point plan, which is part of the NHS Long-COVID Plan.
The Taskforce is made up of nearly 100 stakeholders, including clinicians, academics,
commissioners, local government and people with lived experience of the long-term effects
of COVID-19. It held its first meeting 29 October, and now meets monthly. Subgroups for
four elements of the NHS five-point plan also meet monthly to discuss post-COVID assessment services, ‘Your COVID Recovery’, research and information, and guidance for
clinicians, commissioners and providers.
Public Health England (PHE) has published guidance on the long-term health effects of
COVID-19, which can be found at www.gov.uk by searching for ‘COVID-19 long term
health effects’. The guidance states that patients recovering from COVID-19 infection
should speak to their GP about local care pathways for support and assessment of any
long-term symptoms or health problems.
PHE-based researchers are continuing to support the International Severe Acute
Respiratory and Emerging Infection Consortium 4C study, which is following up outcomes
in individuals who were hospitalised and working with other research groups looking at the
long-term effects of infection. Further information can be found at www.isaric4c.net.
NHSE&I has worked with University Hospitals of Leicester NHS Trust to develop Your
COVID Recovery, a digital platform to support people struggling with ongoing symptoms
resulting from the virus. The platform is being made available in two phases and is for
people who have been discharged from hospital or who have been managing the condition
Phase 1 launched in July and can be found at www.yourcovidrecovery.nhs.uk. This phase
• general information on all aspects of recovering from COVID-19, including physical,
emotional and psychological wellbeing;
• general advice on recovery and returning to work, and information for families and
• signposting to other agencies, such as the British Lung Foundation and the
Phase 2 launched this winter and will provide access to a tailored rehabilitation plan. It will
enable people to set goals for their mental and physical health, receive peer-to-peer
support through social community forums, offer an ‘ask the expert’ facility, and allow
patients to contact and be monitored by their local rehabilitation teams to ensure that they
are on track with their care. This adds to the support that is available through existing
community and hospital services and the Your COVID Recovery website.
In December, the National Institute for Health and Care Excellence (NICE), in partnership
with the Royal College of General Practitioners, published a long-COVID guideline, which
can be found at www.nice.org.uk by searching for ‘COVID-19 long-term effects’. This
guideline defines three phases following infection consistent with COVID-19 where there
are signs and symptoms, which are:
• Acute COVID-19, where there are signs and symptoms for up to four weeks;
• Ongoing Symptomatic COVID-19, where there are signs and symptoms from four to
12 weeks; and
• Post COVID-19 Syndrome, where there are signs and symptoms that develop
during or after an infection consistent with COVID-19 for more than 12 weeks, and
are not explained by an alternative diagnosis. Long COVID is also included in the definition and is used to describe signs and symptoms that continue or develop after Acute COVID-19, so this encompasses both Ongoing Symptomatic COVID-19 and Post-COVID 19 Syndrome.
The NICE guideline advises that people with new, ongoing or worsening symptoms four
weeks after COVID-19 infection should seek assessment from their GP.On 18 December, NHSE&I announced that 69 long-COVID assessment service centres were now operational across England, thanks to an initial investment of £10million. Information on this can be found at www.england.nhs.uk by searching for ‘Long COVID patients to get help’. A further 12 long-COVID assessment service centres are expected to
launch this year, which will be located in the East Midlands, Lancashire, Cornwall and the
Isle of Wight.
Services that help people experiencing long-term health effects from COVID-19 are for all
those affected, regardless of whether they were hospitalised or had a positive test. These
services offer specialist assessment and diagnosis to ensure patients get the right
treatment and add to the support available through general practice and the Your COVID
Recovery digital service.
Patients will be able to access services through a referral from a GP or other healthcare
I hope this reply is helpful to Ms Callow.
Ever felt that you have not been taken seriously?
When I think of the amount of times I have heard ‘we had no idea Covid19 would trigger chronic illness’ I want to scream. I was doing as much as I could possibly could to reach ‘the powers that be’. It was only when it started to happen that they had their eyes opened. Extra frustratingly for me, the UK Government and NHS England have publicly stated that they want to work more with social enterprises as they have the ‘boots on the ground’ knowledge. OK…… so why not listen to one when they get in touch with their concerns and suggestions for action?!
As you can see from this extract of my original email –
The only way to avoid Post-Viral Fatigue Syndrome evolving into M.E/C.F.S is to rest. I have been posting that preventative message across social media for the past month or so.
I was, and still am, very concerned about central Government messaging. At no point has there been a publicity campaign to encourage people to rest after having Covid19. It is only after patients have been sick for a period of time and haven’t recovered that a Dr. or Long Covid clinic staff member may (or may not) advise the patient to avoid exercise. It is too late by that point! How many will have forced themselves back into work whilst still not ‘recovered’ and cause themselves to have a significant setback?
I’ll have little sympathy for Government complaints of the Long Covid economic burden in terms of employment. Short term resting and recuperation would have had far less of an economic impact. Instead, the narrative of ‘get back to work’ spectacularly backfired. There may now be hundreds of thousands who may not be able to return to work for a long period of time, if ever.
With the third wave possibly happening and/or ‘opening up’ and hearing MANY people saying it’s no big deal because death numbers are low…..the time for messaging is still vital! I feel nauseous just thinking about how many people will develop Long Covid (possibly M.E) over the coming year or so from a ‘mild’ Covid19 infection.
We now know that Post Viral Fatigue Syndrome is a subset of Long Covid. Rightly or wrongly, M.E/C.F.S diagnoses as a result of Covid19 are happening.
Much too little DHSC and much….much…too late!
and Foggy (OBVIOUSLY)