Covid-19 has worsened our ME, report survey respondents

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Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to gather evidence of the impact of Covid-19 on people with ME.

The aim of the survey is to provide data that can be used, along with personal stories, to help our campaign to make the government aware of the impact that Covid-19 is having on people with ME and the need to provide effective support to those affected. 

The initial findings, based on the first 220 responses, show clearly that Covid-19 had a significant impact on respondents. Over three quarters of the respondents said that Covid-19 made their ME symptoms worse. This impact appears to be long lasting, with over two thirds of respondents reporting that the worsening in symptoms has lasted more than 6 months and have still not resolved.  Not only have existing symptoms worsened, but over 70% of respondents reported that they had developed new symptoms, including  shortness of breath, chest pain and dizziness. 

We believe these results provide evidence that people with ME are vulnerable to Covid-19 and should be considered for vaccination as part of the priority group for those in at-risk groups. We have prepared a letter for people with ME who wish to receive the vaccine to send to their GPs highlighting this new evidence of the harm done by Covid-19.

The survey was launched on 22 March 2021 and will remain open for responses over the next few months. If you have ME and have had Covid-19 please help us by taking part. The more people who take part the greater the weight of evidence we will have to call for effective support and care.

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8 thoughts on “Covid-19 has worsened our ME, report survey respondents”

  1. Good afternoon,
    Is there also any study going on looking at the impact of having the vaccine for those with ME at all?
    My apologies if I have missed this information previously.
    Thank you for your help.
    With kindest regards,

  2. This is something I’ve suspected for awhile. Another question I have is how do people with ME/FM do with the vaccine? Does it trigger the symptoms long term as well? Are they more likely to have strong reactions to the vaccine and/or can it trigger worsening symptoms? I’ve been waiting hoping to learn more as time moves forward through the vaccination process.

  3. I think those with past vaccine issues worried about the Covid vaccine worsening their ME should be getting a lower dose shot like they give to babies (with other adult vaccines) where the dose is divided in half then given 4 weeks apart. Immunity will take longer of course to well over 2 months instead of over one approximately 6 weeks.

    But because there’s a small amount of us that worsen after vaccination. this may be a prudent move.

    I permanently worsened after a flu shot 5 years ago. I even had the baby dose! So personally I’ll be taking even less. Maybe a 1/10th test dose. Then I’ll have to go from there in 1/4 doses 4 weeks apart until I developed antibodies. So could take over 4 months

    The good news is there’s plenty of vaccine leftover in the used ampules they come in , meaning I won’t be wasting dosages. But convincing my GP will be a challenge

    I’m still pro vaccination for ME/CFS sufferers though, as Covid is just too bad to get.

  4. These are not vaccines. That said I developed ME after a flu vaccine. ME is neurological and these so called vaccines can cause severe neurological side effects. It took me 10 yrs to discover how to manage my ME and in part never taking another vaccine. It was my path as MLmedics have no idea. I see the stigma is still there. Make yourself fully aware of what these so call vaccines can do and how they work. They are totally experimental. Note, the number of reports of persistent symptoms/PVFS all labeled as Long Covid. Another name for ME? Buyer be aware. I use to subscribe to MEAction but never found it to be of help just an extension of MLmedics although a place to share and seek support, not helpful for me. I lost 10 years of my life to ME, and still limited to a degree but have learnt by myself how to recover and manage in the long term. Thank you. Graham.

  5. Same here. Vaccines are often precursors to ME onset or worsening of symtoms. I have heard of people getting more sick after the vaccine but not everyone. It would be good to have stats for this, comparing the different vaccines too.

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