MEA Monthly Poll: The 2nd and 3rd Covid Vaccine with a review and update for people with ME/CFS

July 6, 2021


Introduction

The 2nd Covid vaccine rollout continues with people in the older and more vulnerable groups now having been offered and/or having received a second dose.

People aged eighteen or over can now receive their 1st vaccine in England, Northern Ireland, Scotland, and Wales. 2nd doses for these groups will be offered eight weeks after the first dose, and it is hoped, in England at least, that these groups will all be vaccinated by September.

A decision about vaccinating children and young people is expected soon, once the Government has received expert advice from the Joint Committee on Vaccination and Immunisation (JCVI).

Key Points

  • The Covid-19 virus is not going to disappear. It is here to stay.
  • Having the 1st and 2nd vaccine is providing a very high degree (90%+) of protection against severe disease, hospital admissions, and is helping reduce mortality.
  • Uncertainty remains as to how long, and to what degree, protection remains after the 2nd vaccine, but current evidence suggests that a good level of protection lasts at least 6 months, probably longer.
  • People over 50 and in vulnerable groups will be offered a 3rd vaccine or booster from September – possibly combined with the flu vaccine. A bigger flu season than normal is being predicted.
  • Evidence is now indicating that mixing vaccines is OK and may even boost an immune system response – e.g., Pfizer for the 1st and 2nd vaccine and Astra Zeneca as the 3rd or booster vaccine.
  • We may have to go through the same battle to convince doctors that people with ME/CFS should be classed as clinically vulnerable because the JCVI group 6 criteria and/or eligibility for flu vaccine will determine the criteria for the 3rd Covid vaccine booster.
  • Information relating to Covid-19, the vaccines, Post-viral fatigue syndromes, and Long Covid, is freely available to download from the ME Association website.

Sections in this blog

  1. The 3rd Covid Vaccine
  2. Eligibility of People with ME/CFS
  3. Covid-19 Mortality
  4. Feedback: The 2nd Covid Vaccine

1. The 3rd Covid Vaccine

The JCVI says the following people should get a booster vaccine and the annual flu jab as soon as possible from September:

– immuno-suppressed adults aged 16 and over

– those living in residential care homes for older adults

– all adults aged 70 or over

– adults aged 16 and over considered clinically extremely vulnerable

– frontline health and social care workers

The JCVI says the following groups of people should then be offered a third booster with “equal emphasis” on giving the flu vaccine as well:

– all adults aged 50 and over

– all adults aged 16-49 years in an influenza or Covid-19 “at-risk group”

– adult household contacts of immuno-suppressed individuals

Most younger adults will receive their second Covid-19 vaccine dose in late summer, so the benefits of booster vaccination in this group will be considered by the JCVI at a later date.

Boosters should ensure protection built up in the population does not decline through the winter months – and that immunity is maximised to provide additional resilience against variants.

BBC News: Covid: When will I get the vaccine?

2. Eligibility of People with ME/CFS

We are likely to continue to experience some resistance from the medical profession over eligibility of people with ME/CFS to both the free flu vaccine, and the new third dose or booster Covid vaccine. However, we will provide template letters you can use nearer the time. We hope that those of you who did manage to obtain priority Covid vaccines, will find it easier to get the free flu vaccine and 3rd Covid vaccine. Some GP practices have declared their willingness to include people with ME/CFS on the free flu vaccine register:

England’s largest GP super partnership, the Modality Partnership, with nearly half a million patients, has placed itself at the forefront of post-viral disease management in UK primary care following discussions with the Doctors with M.E…

As of January 2021, Modality’s medical directors group have agreed that their organisation will be informed that patients with myalgic encephalomyelitis will be consistently offered the seasonal influenza vaccination under the NHS GMS contract. This is due to its longstanding status as a neurological condition, which will be consistently reflected across the organisation.

Doctors with M.E. driving advancement in frontline care

3. Covid-19 Mortality

As people who are more vulnerable and in the older age groups have received the 2nd Covid vaccine the mortality rate has been in decline. Spikes in infection rates are likely to continue particularly as new variants emerge, but as the population becomes more protected, these spikes are less likely to be significant.

The death rate from Covid-related infection has declined from the numbers we were seeing with the first wave although any death from Covid-19 is of course regrettable. In general, the mortality rate associated with Covid-19:

  • rises sharply with age and is higher among men than women,
  • is higher in people with pre-existing medical conditions,
  • is significantly higher among people with a self-reported disability or a learning disability diagnosed by a medical practitioner,
  • is higher among people who are in deprived areas,
  • is higher in people from some ethnic minority groups,
  • is higher among people working in some public-facing occupations and in close proximity to others, such as nurses, social care workers, security guards, transport workers, and sales and retail assistants,
  • is higher in people with excess weight which is associated with an increased risk of a positive test for Covid-19, hospitalisation, severe disease and death.

Source: The Kingsfund: Deaths from Covid-19: how are they counted and what do they show?

4. Feedback: The 2nd Covid Vaccine

We have reviewed a large amount of feedback and taken into account previous polls on the subject, but it is very difficult to reach any conclusions about why some people with ME/CFS are reacting badly to any of the Covid vaccinations.

Considering the quality of the evidence collected, we can only say that most people with ME/CFS who had the 1st Covid vaccine, irrespective of which brand of vaccine, appear to have had little to no reaction to the 2nd Covid vaccine.

However, some have been discouraged from gaining full protection with the 2nd Covid vaccine because of bad reactions to the 1st, and others have had the 2nd vaccine and are experiencing prolonged periods of worse health including relapses that are continuing weeks or months after the triggering event.

People's experiences with the vaccines would seem to confirm that there are no clear answers to vaccine suitability or to side-effect susceptibility in ME/CFS. Any reaction to a vaccine, or to the effort involved in travelling to a vaccine centre and having the vaccine, and/or to post-exertional malaise, doesn't seem to be predicated by illness severity, vulnerability, or age (where we know a person's age and related information).

It seems more likely that a reaction is because of an individual's vulnerability or perhaps because sub-groups within the ME/CFS population might have particular problems with the immune system for example. It may also be that comorbid diagnoses, conditions other than ME/CFS, and general ill-health have contributed to problems people have experienced.

The ME Association
  • If you do experience a reaction to a vaccine that is more severe, is unusual, or persists for longer than a week, you should contact your GP. You should also consider reporting the reaction to the MHRA using the Yellow Card system.

The Need for Research

Without specific research into the Covid vaccines and ME/CFS that can examine the way in which the immune system reacts to these vaccines and can measure symptom responses for example, we are unable to reach any firm conclusions.

But the number of stories we receive about medium-term reactions is worrying. We might also learn more about vaccine reactions when official evidence relating to side-effects are published and reviewed, e.g. we might learn that reactions in people with ME/CFS are comparable to reactions in the general population or that they represent an anomaly that could prompt investigations.

We do know that vaccinations can be a trigger for some people, resulting in a diagnosis of ME/CFS. Vaccines might also then trigger symptom exacerbations and even relapses in people who already have the condition. But we have no research evidence to support this presumption in regard to the Covid vaccinations.

When you have had a bad reaction particularly one that has led to a relapse in ME/CFS symptoms, reaching a decision about the 2nd dose or the proposed Autumn booster vaccine will be difficult. But this needs to be weighed against the risk of not being fully protected and your likely exposure to the virus. Covid-19 is unlikely to go away any time soon and we will all need to learn to accept the danger it represents.

We have highlighted a selection of feedback below and shown several accounts from people who experienced bad reactions to the 2nd vaccine:

1. I wrote and told you about the awful reaction I had to the first vaccine. I refused to have AZ again and after much denial, my GP agreed to let me have the Pfizer as my second vaccine. Apart from a stiff arm, NO SIDE EFFECTS!!!

2. I have had both doses of the Astra Zeneca vaccine.  I had no reaction to the first dose but had to spend 2 days in bed after the second dose where symptoms were like a bad hangover mixed with a mild version of the flu..

3. I had my first vaccine in March. I had all the side effects, fever etc, followed by a serious relapse. The vaccine set me right back to where I was pre-pandemic. Then, after 8 weeks I started to see some small incremental improvements. With the second vaccine, I didn’t have any initial reaction at all, barely even a sore arm. But then a slow and distinct decline began which in the 6 weeks since has just gotten worse and worse and is showing no signs of stopping. I regret having the jab and have decided I will not have any booster.

4. I have had severe side effects from both AstraZeneca vaccine doses. The first time I crashed for 9 weeks. The second time the symptoms were not as severe for the first 4 weeks then I crashed again. Still in bed 8 weeks after second jab and feeling very ill. I shall not be having any more vaccines if offered. I am 71 and have had M.E. for over 50 years.

5. My 2nd dose was six weeks ago and it caused a full-blown relapse – severe headaches, nausea, muscle/joint pains, wobbly legs, extreme fatigue, stomach upsets, emotional vulnerability etc. the list goes on.

6. I have gone back to square one again and having had my health back for the last 11 years – even becoming a gym member and returning to work – I really can't cope with the thought that I may be left like this for the rest of my life (I am 55 years old). I simply can't go through it all again!

7. I had the AZ vaccine and didn't seem to have much reaction to the first dose. But since the second one, weeks ago, I have had increased fatigue and feeling more unwell generally. I am in my late sixties and have had ME for 15 years. Now there are the attendant ailments that go with aging beginning to kick in, complicating things.

8. I had my first Pfizer jab on the 18th of February and beyond having a sore arm for a few days and feeling slightly more tired than usual for a couple of days I was okay. I had my 2nd Pfizer jab on the 21st of May and since then have been very unwell with another major ME relapse, which is the worst I have ever experienced.

9. I had Pfizer jab 10 February, resulting in sore arm for 3 days. 11 weeks later had second jab. Very unwell for one week, flu-like with splitting headache between the eyes. Took 8 paracetamol a day, but too painful to get much sleep. Stayed in bed 4 days. Took 3 weeks to return to normal activity level, which I guess is about 30% of an average well person.

10. I had my first dose of the Pfizer vaccine in February and subsequently felt generally unwell for about four weeks. After 12 weeks I had the second dose in May, also Pfizer. Since then, I have experienced a flare-up of all my ME symptoms except brain fog and also a worsening of my arthritis pain, and this has so far shown no sign of improvement. I don’t regret having had the vaccine as I suspect the results of a Covid infection would have been worse, knowing that my daughter who had recovered from ME  caught Covid in March 2020 and is still unwell with long Covid.

Selected feedback on Covid vaccines from people with ME/CFS
  • If you would like to share your Covid vaccine story, then please send it to: Feedback@meassociation.org.uk We can't reply to all the stories we receive, because there have been so many, but we do promise to read and collate them. Thank you!

Russell Fleming, Communications Manager, ME Association

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