Dare you disagree with Government guidelines? The following are excerpts of the new guidelines posted last night on the Government’s website. Unfortunately, people on ‘immunosuppression therapies sufficient to significantly increase the risk of infection’ are still on the list with no justification of what this risk should be. Based on the experience emerging from pwMS getting COVID-19 on MS disease-modifying therapies (DMTs) this statement is incorrect. On balance pwMS on DMTs don’t appear to be at increased risk of getting COVID-19, severe COVID-19 or dying from COVID-19. In terms of dying from COVID-19, the same risk factors playing out in the general population appear to be playing out in pwMS, i.e. older age, comorbidities and disability. Advanced disability is linked to age; pwMS who are disabled tend to be older.
The good news is that shielding is now less intense and people who are shielding can at least go out and meet with people albeit at a distance. This will be good news for many people. Please be aware that this virus does not appear to be spread outdoors unless you are in close contact with people.
Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19 (Updated 31 May 2020)
Clinically extremely vulnerable groups
Expert doctors in England have identified specific medical conditions that, based on what we know about the virus so far, place some people at greatest risk of severe illness from coronavirus. Disease severity, history or treatment levels will also affect who is in this group.
Clinically extremely vulnerable people may include:
- Solid organ transplant recipients.
- People with specific cancers:
- people with cancer who are undergoing active chemotherapy
- people with lung cancer who are undergoing radical radiotherapy
- 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
- People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD).
- People with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell).
- People on immunosuppression therapies sufficient to significantly increase risk of infection.
- Women who are pregnant with significant heart disease, congenital or acquired.
- Other people have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions.
More information about who has been classed as clinically extremely vulnerable is available on the NHS Digital website.
If you’re still concerned, you should discuss your concerns with your GP or hospital clinician.
Staying at home and shielding
People classed as clinically extremely vulnerable are advised to take additional action to prevent themselves from coming into contact with the virus. If you’re clinically extremely vulnerable, you’re strongly advised to stay at home as much as possible and keep visits outside to a minimum (for instance once per day).
This is called ‘shielding’ and the advice is now updated:
- If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping 2 metres apart.
- If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household (ideally the same person each time).
- You should stay alert when leaving home: washing your hands regularly, maintaining social distance and avoiding gatherings of any size.
- You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
- You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).
The Government is currently advising people to shield until 30 June 2020 and is regularly monitoring this position.
For full details please refer to the Government’s website.
CoI: multiple
I see the government still don’t get who is extremely vulnerable. Absolute shambles, after eight weeks text me telling me to register as I’m in this group, but try and complete the form and it rejects me. To be honest, not sure why they even did this. I have no idea which disease prompted the government to send me a text message.
Thanks Prof G. It makes sense pwMS do no worse then the Gemeral Public. Since treatment of MS is based on dampening the immune response and serve COVID is caused by extreme response by the immune I suspect pwMS have better outcomes then the general public. My question is can covid 19 kill on its own if there is no over active immune response ? And how does diabetes increase the risk of severe COVID?
Re: “My question is can covid 19 kill on its own if there is no overactive immune response ?”
Yes, it can. You can die from the direct effects of virus; we suspect due to the damage it does to blood vessels, which cause thromboses. The latter may be independent of the so-called cytokine storm that occurs, but the latter makes things worse.
Re: “Since treatment of MS is based on dampening the immune response and serve COVID is caused by extreme response by the immune I suspect pwMS have better outcomes then the general public.”
Yes, this is something we hypothesised might happen. However, early data does not suggest this. Saying that the early data is affected by reporting bias, i.e. the more severe cases tend to get reported early because they are admitted to hospital and the milder cases, who self-isolate and get better at home, get ignored and are not reported. So, in short, it is too early to answer this question.
Thanks Prof G. Good to understand the disease COVID 19 so you can reduce your risk or act appropriately depending on your circumstances. Any light at the end of the tunnel? China claims to have vacine that its 99% sure works?
Take that with a large measure of Sodium chloride.
I was hoping that the section relevant to DMTs would have been fine tuned now more is known. My neurologist is shielding all her patients on any DMTs but in other news my delayed May ocrelizumab is rescheduled to July ☺️
It feels to me like this government is blind to science, evidence and facts. They’re a bloody joke.
The claim they are “following the science” is a preamble to throwing the scientific advisors under the bus once the inquiry hoves into view. The scientists are nothing but a human shield.
To misquote an old Salford saying. The scientists/medical professions are following the government’s parade with a brush and a shovel.
😉
Prof G – the government guidelines have always said the same, but as I understood it, ‘immunosuppressive therapies which significantly increase risk of infection’ only applied within MS to alentuzumab or Cladribine in certain situations.
And therefore being on ocrelizumab, have not been shielding so far, and still presume that I am not included. Is this right?
Right
I’m on ocrelizumab and received the shielding letter so have been loosely shielding – if that makes sense
Dear Professor G,
I read with interest your comments about pwms on immunosuppresant drugs. I am 66 years old with RRMS. I am otherwise healthy and active. I am taking Gileyna, which from what I have read, appears to be in a bit of a category on its own as either being:
-a increased risk factor for more serious infection should one catch COVID
Or
-potentially one of a number of drugs being tested as a potential treatment for COVID
I’d love to know what you think about these seemingly contradictory views.
Thanks so much for providing this channel for questions.
Katharine Thomas.