Ruth O'Rafferty seems like an unlikely rebel.
The 55-year-old exudes the sort of warmth and kindness you might expect from a former primary school teacher, but as founder of the Scottish Vaccine Injury Group (VIG) she is suddenly taboo.
Married with two adult sons, Mrs O'Rafferty had been living a quiet life in Law village, South Lanarkshire, until the Covid pandemic turned her world upside down.
It began in March 2021 when she began experiencing odd allergic reactions out of the blue shortly after her first dose of the AstraZeneca vaccine which suddenly became much more severe within days of her second vaccine dose in June that year.
READ MORE: Scottish Covid inquiry lawyer says vaccine injured face 'horrific' stigma
"I started reacting to everything: toothpaste, face cream, anything I ate or drank. All I could have was milk, white rice and apples.
"I started to get muscle weakness. My skin was burning. I had sensations like hot water was running down my body or insects were crawling all over me. I had tremors, temporary paralysis in my limbs, and feelings like electric currents."
Over time she became unusually sensitive to noise and found herself unable to process words or hold a conversation.
"I'd just sit and stare at people," said Mrs O'Rafferty, who had never had Covid.
An immunologist at an NHS anaphylaxis clinic eventually diagnosed mast cell activation syndrome (MCAS), a condition where the body develops hypersensitivity to allergens. In many cases no specific cause can be pinpointed.
It was only after visiting support groups online that Mrs O'Rafferty encountered other people who said their symptom onset had coincided with vaccination, although any claims of cause-and-effect remain controversial and unproven.
She has since made a partial recovery following nearly £3000-worth of private treatment with drugs not available on the NHS, but remains on an extremely restricted diet and still suffers brain fog.
After "stumbling" across reports about the forthcoming Scottish Covid Inquiry last summer, Mrs O'Rafferty founded Scottish VIG with Alex Mitchell and James Watt - both injured by the AZ vaccine - and set about finding legal representation so that they could apply for core participant status.
EXPLAINER: Vaccine damages - and how schemes work around the world
It wasn't easy - "every door was shut in our face" - and the solicitors' firm which eventually took them on does not want to be identified due to the controversy associated with vaccine injury.
The group's membership - which is limited to people who have already secured damages for vaccine injury or bereavement and those where there is probable cause - has increased to nearly 300, but Mrs O'Rafferty says it still faces online censorship.
"I put something on TikTok - just a video of our barrister talking about vaccine injury at the UK Covid inquiry [where Scottish VIG is also a core participant] - and TikTok has pulled that down as 'misinformation'."
According to data released in April 2021 by the UK's Joint Committee on Vaccination and Immunisation (JCVI), the estimated incidence rate of CVST - a brain blood clot complication linked to the AZ vaccine - ranged from 0.2 per 100,000 in the 60-69 age group to 1.1 per 100,000 among 20-29-year-olds.
In all age groups - even the youngest - this was outweighed by the estimated odds of being admitted to intensive care with Covid complications.
Nonetheless, adults under 40 were switched to Pfizer and Moderna jabs as a precaution after data indicated that around one in 50,000 under-50s were developing a potentially life-threatening clotting disorder, Vaccine-induced immune thrombocytopenia and thrombosis (VITT), after the AZ vaccine.
Population-wide data for England continues to show that all-cause mortality rates remain higher among unvaccinated individuals compared to those who have had at least one Covid vaccine dose.
No medicine is 100% safe, however, and since 1979 the UK has funded the Vaccine Damages Payment scheme (VDPS) as a form of "social contract" to compensate citizens harmed as result of immunisations which are necessary for public health, such as preventing measles epidemics.
While it faced criticism for decades, detractors say the pandemic has exposed its shortcomings.
The sheer scale of the rollout, with more than 151 million Covid vaccinations administered to date, means that the number of claims submitted to the VDPS has gone from 100 a year handled by a staff of four to nearly 7000 for Covid vaccines alone.
Even with staffing ramped up to 80, hundreds of claimants still wait over a year or 18 months for a response. Most claims are ultimately rejected.
To be successful, claimants must demonstrate causality on a balance of probabilities and be considered at least 60% disabled.
As of August 7 this year, 137 awards had been made but 201 had been rejected after meeting the threshold for causality but not disability.
In total, 2375 had been rejected on grounds of causality and more than 4000 were still being processed.
Decisions are based on an evaluation of patients' medical records by a VDPS-appointed doctor.
One claimant, who was unsuccessful in relation to a bereavement, says the experience left them feeling like "they are actually seeking proof beyond all reasonable doubt".
Mrs O'Rafferty said of the four members in Scottish VIG who have so far secured a payout most only did so with the help of a solicitor. Dozens more - who are still going through the application process - only heard about the scheme by chance.
She said she would like to see much more done to raise awareness of VDPS and for claims to be handled with a "trauma-informed and compassionate" approach.
"When you do get turned down, they've got this list of 100 points that they put comments against so you have to go through all this stuff to try to figure out why it is you've been turned down.
"A lot of the people in our group are extremely brain-fogged, very traumatised, a lot are visually challenged, and they just can't cope.
"What they need is a letter saying 'I'm really sorry but we've turned you down and this is why'."
The UK damages scheme has also faced criticism from legal academics that the £120,000 lump sum is fixed - regardless of the disability or loss - and less generous than comparable countries which fund everything from funeral expenses to ongoing medical costs and loss of earnings.
This has led to calls for the sum - which was set at £120,000 in 2007 - to be increased or replaced by a "sliding scale" with no cap.
READ MORE: The vaccine injured are not the same as antivaxxers
Peter Todd, a solicitor who is representing 50 vaccine injury claimants in a class action against AstraZeneca under consumer protection law, said the £120,000 award is too low.
He said: "It's been massively eroded by inflation. I've looked at doing cases under the Covax scheme for developing countries and it seems that a developing country like Malawi gets more compensation under that scheme than UK residents get under our scheme, so that shows you what a pathetic scheme it is really.
"It would make much more sense to award full and fair damages. Severe vaccine injury is rare so it wouldn't cost the country very much. Before Covid, there was an average of one case accepted per year out of 65 million people."
Alex Mitchell, co-founder of Scottish VIG, was awarded damages through the VDPS after a life-threatening blood clot disorder caused by the AZ vaccine led to his left leg being amputated above the knee.
The 58-year-old had to give up work as a scaffolder and can no longer ride his beloved Vespa scooter.
He said: "I've lost my job, I've lost my livelihood, I've lost my passions, my sense of identity. I used to be 'Alex the Mod', now I'm 'Alex the guy who lost his leg to the vaccine'.
"It was less than four years' salary for me. All it did was save my house, because I had no money for 10 months.
"I've lost everything because I was asked to do the right thing. All I'm asking is for my country to do the right thing by me."
Tomorrow in the Herald on Sunday: 'Nothing can magic him back' - The loneliness of vaccine bereavement
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