Why must we fight to get essential Covid vaccine protection?

My name is Rachel and I’m 37 years old. I have suffered with ME/CFS for 8 years. Unfortunately, I also suffer multiple chronic illnesses as well. 

These include, Endometriosis, Barrett’s Esophagus, Gastroesophageal Reflux Disease, osteoarthritis, Nutcracker syndrome, Fibromyalgia, Interstitial Cystitis, Pelvis Congestion Syndrome, and a vitamin D deficiency.  

Each condition has different symptoms and are very debilitating to live with. I have regular therapy to help me cope with these challenges.  

I’ve suffered many different illnesses over the years including Campylobacter, recurring acute Tonsillitis, Shigella, Neuralgia, Paroxysmal Hemicrania, food intolerances, severe pre-cancerous cells, post-viral optic neuritis, burst cysts, and many more.  

I’ve had 7 surgeries for Endometriosis on bladder, ovaries, womb, kidney, Fallopian Tubes, and bowel, Adenomyosis, Appendicitis and Adhesions. I’ve had countless scans, appointments, and tests, some of which cause my body to react – a lot of my blood results are borderline. 

Due to my medical history and weakened immune system I had hoped to be put in Group 6 for the Covid vaccination, however, my GP said no. I sent them a letter using the template the ME Association produced and I still got a letter back refusing to put me in Group 6.  

I was left feeling upset and frustrated. I’m not saying that because I have ME/CFS the Covid infection will kill me, what I am saying is that it is likely to affect me quite badly and what I fear the most is the reaction it would cause and the long-term effects on top of everything else I suffer with.  

The ironic thing is that on the Horizon programme it said that scientists are trying to find treatments for Long Covid sufferers, and that Long Covid mimics a lot of the symptoms of ME/CFS that we deal with daily. This has the potential to help us all, which is amazing news, at last!!  

They’re also hoping to find treatment for the Mitochondria Cells that are believed to be dysfunctional. These are the battery cells of our body that should produce energy. I’ve had mine tested and the results were not good but sadly there’s no treatment for them yet. 

So, they want to help patients with Long Covid which mimics ME/CFS but for those already suffering with ME/CFS we can’t have the vaccine as a priority.  

We have to risk getting the virus and adding to the hell we already go through! I feel absolutely disgusted and fuming about it all. Once again it seems, people with ME/CFS are being dismissed.  

Why do we always have to fight and are never taken seriously? I get sick of the constant battles and now, yet again, even in a pandemic we have to fight. ME/CFS is a debilitating multi-systemic chronic illness, classified as a Neurological Disorder by the World Health Organisation but yet we don’t get considered. It just feels so unfair! 

I did express by frustrations on Facebook and someone in the medical profession said they would help me get the vaccine. I’m so grateful to that person for reaching out to help me.  

I had the vaccine and it all went well until later that evening when I was hit badly – uncontrollable shivers, 39.8 fever, unreal pains in muscles and joints, severe headache, sickness, and dizziness – I felt so poorly. 

This started Wednesday evening. but I was better by Sunday. It’s now Monday and I’m relapsing with a bad flare and with tonsillitis rearing its ugly head.  

I suspected my body wouldn’t cope well with the Covid vaccine as I had a bad reaction to the flu vaccine, but needs must and I wanted the protection. 

If my body reacts this badly to the vaccine, how would it react to a full-blown Covid infection? I’m grateful I’ve had the vaccine but I am worried about other ME/CFS sufferers that aren’t so fortunate and are still waiting or battling with their GPs to get it. 

My children, aged 8 and 5, went back to school last week which was wonderful. But they are now mixing with 30 other households in their classrooms and it’s a big risk that they’ll bring the infection home. 

I’m very thankful for all the work the ME Association and Dr Charles Shepard are doing to try and get people with ME/CFS priority vaccinations and for keeping us informed of developments, but I worry that this is the only support and help we get. 

I raised over £1000 for the ME Association 4 years ago doing a sky dive (overcoming a big fear of mine in the process!. I think we all hope that one day with enough funding we can get the support we deserve.