After having an adverse reaction to the AstraZeneca vaccine myself in 2021 and becoming chronically unwell, I set up the UK's first support group for people affected. A poll of our members showed that 45% felt extremely dissatisfied with their NHS handling of their adverse reaction. What has your experience been (if any) as either a patient affected or a medical professional when presenting/presented with an adverse reaction to a Covid-19 vaccination ?

After having adverse reactions to 2 Astra Zeneca Covid Vaccines, I am finding that the health professionals I see do not accept that my symptoms are caused by the Vaccines. They are also not interested in researching the possibility that the Covid Vaccines have contributed to symptoms that occurred 4 days after my first Vaccine. Do you have any advice on how I can overcome this reluctance to hear my concerns, and prevent my thoughts and experiences being dismissed?

 

I had two Pfizer vaccinations. Maybe because I live close to a large hospital and have seen a neurologist who is now leading a Long Covid clinic, I have never had my reaction questioned. In many ways initially I think I was treated as an interesting curiosity.

However that doesn’t mean I’ve had any useful treatment. Sadly the NHS feels too siloed, slow to react to emerging learnings and generally subject to political and financial pressure that means accepting vaccine injuries as fact is not something consultants, let alone GPs, want to do. 
 

I worked out I had MCAS in summer ‘21 but I was first laughed at and then ignored when I suggested this. It’s too niche apparently. I’ve paid privately to be diagnosed, bought private prescriptions. The same for PoTS. Yet those who diagnosed me also work for the NHS yet these aren’t accepted and put on my records, and my GP won’t take on my prescriptions.

 

I understood initially why there was a lack of knowledge as the vaccines were new, but it’s been nearly three years and no doctor I see now i surprised. But where is the support? Who is researching us? That’s even more worrying than the lack of care or foresight. 

I wasn't going to post here, as I have severe trust issues, 

I automatically assume everybody will be just like the GP's, who dismiss everything, and aren't interested in helping, to date after reacting to 2 AstraZeneca Vaccines, I have only 1 diagnosis (Post Vaccine Headache's  that can occur in up to 30% of cases), that's actually mentioned the Vaccine, despite there being 3 main issues caused 🤷🏼‍♂️

One is Bilateral Lymphoedema, and another is Large Unidentified Lump, in my Right Leg, and the doctors verbally agreed the Vaccine is the cause, yet they didn't actually write it down.

They seem to say one thing, but actually appear to believe something else, no sincerity, most of the time, appearing to dismiss the vaccine as the cause.

More recently, I believe it's caused another issue, but I'm not about to try, to push them, I don't want to be, hospitalised over Christmas, interference with immunity, acquired through previous vaccines, for other diseases 🤷🏼‍♂️ 

That's how poor things have been, I won't trust anyone, not even to test for another communicable disease, that is highly contagious, and poses a risk of death, it takes a lot to get to that point, but the answer is nobody researches us, besides those at UK CV Family, and our closest loved ones, and it appears, nobody cares besides those either😊

I hope maybe someone gets some answers to these questions, because it would be nice to know if anyone is actually researching us? However, I suspect not 😔🤷🏼‍♂️

I can't even see a GP, I've never seen one, since I joined the practice, I saw a clinical nurse once, to get a referral to the nearest Lymphoedema Clinic 33 mile round trip away, with 2 buses to get there, that are unreliable, I have to travel 2 miles just to see a clinical nurse, it might not sound far, but I don't drive, and never will be able to, since the vaccines seem, to have damaged my eyesight, with enlarged optic disc, and too much light, entering my eye 😔🤷🏼‍♂️

I’m so sorry Ceri. I share the frustration that no one is researching us. We’re really not as rare as is made out and the side effects are life-altering and seemingly permanent and even progressive for so many of us. 

It feels to me like a political decision because no one wants to question a medical intervention so many people have had. Yet they need to. I find my lack of trust in doctors harder to deal with than my actual medical issues as I’m always second guessing what they say and do and why. It’s truly horrific.
 

I hope you and we get better care and answers soon. 

After my severe and now chronic reaction to a single COVID vaccination in 2021, it was immediately apparent that doctors did not have a clue what they were talking about. My first comment upon calling 111, after learning what my job was (a NHS SARS-CoV-2 scientist at the time), was "you probably know more about this than I do". Not helpful. Several doctors recommended I get another vaccine, many have inferred my symptoms are psychological, many have denied research presented to them (including research I am actively involved in and therefore know a hell of a lot more about than they do), and one doctor refused a referral after 6 months of non-stop debilitating symptoms because "dizziness and nausea are expected after a vaccine". The 2 good NHS doctors I have had both respected my expertise as a scientist in the field, respected my lived experience, and based their decisions on evidence rather than deeming it acceptable that I rot away slowly. The other good doctor I have is private - but why should we have to pay when the NHS has harmed us? 

It took 14 months to find the blood clots in my lungs, even though my D-dimer was elevated and AstraZeneca is a known thrombotic vaccine. I was told repeated D-dimer just showed inflammation. Beyond that being wrong (it's a clot breakdown factor), they did not even offer me treatment for this alleged inflammation. 

~3 years into COVID vaccination and there are still no guidelines based on evidence. Patients are still leading the way with research. Doctors refuse to prescribe mechanistically helpful drugs off-label. They forget that "do no harm" also applies to doing nothing and letting patients suffer due to their ignorance and unwillingness to take risks that highly informed patients consent to. 

In all: Reactions are not understood at all clinically, but even worse, there is a reluctance to learn, even when the patient sitting in front of them is a subject expert. Patients are generally not well provided for, unless they happen to find the unicorn doctor who cares for their patients and listens to research. This breaks the GMC principle of justice - whereby patients should expect to receive equal treatment. The entire system needs dismantling. We need critical thinkers as doctors, with proper scientific training so they know how to tackle a problem. We need specialist clinics who can help patients holistically, instead of by each system. We also need URGENT tests, diagnoses, treatment, and research. This is because it is no use finding a signal for small fibre neuropathy in 10 years time when finally enough patients have been tested. Without up-to-date rapid diagnoses, future vaccinees cannot give informed consent. Patients know the risks, doctors do not. How can anyone make an informed consent in this situation? Finally, all the faffing around pretending that we do not exist only fuels mistrust in the system - why would anyone trust doctors and authorities when we get abandoned, abused, ignored, and left to rot after we took a government and NHS approved vaccine? 

I too was left with declining health immediately after having AstraZeneca in April 2021. I was very apprehensive about taking something that had been rushed through the approval phase, but my employer was pressurising staff to get vaccinated and the government and the NHS promoted the vaccine as something that anyone with any condition (except for kids) should take to get some sort of protection (they didn’t say for sure what the benefits would be). We all now know that the vaccines couldn’t stop people getting infected nor stop them transmitting the virus, but the risk of damage to our health has been largely swept under the carpet. It doesn’t help that the Green Book fails to recognise all but a few conditions as being caused by adverse reactions to covid vaccinations. Add to this the reluctance or outright stubbornness by health practitioners to recognise or diagnose post covid vaccination syndrome/ vaccine injury and it should become clear how dire the health care is for people like me. I now have a private diagnosis but I also need my regular GP to be open minded enough to take the recommended medication and further tests seriously.

 The NHS needs to recognise that post covid vaccination syndrome/ vaccine injury is NOT a psychological condition; instead people experience a range of physical conditions resulting from damage to their immune and other systems. Typical issues include (but are in no way limited to) Chronic Fatigue, Mast cell activation syndrome (MCAS) and Postural tachycardia syndrome (PoTS). Despite large numbers of people experiencing similar issues, diagnosis on the NHS is difficult to impossible. Many allergists won’t even accept that MCAS is a real condition, yet alone diagnose it, despite NHS research papers from over 15 years ago.

 Many people are living at a fraction of  how their lives used to be, or could be, thanks to the covid vaccination; some recognition, understanding and support from the Government and NHS health providers would go a long way.

I agree Hannah.
 

The issues with the green book are so frustrating. So many of us deserve and need the VDPS payment yet we have no chance of getting it as there is no recognition of our reactions.

I’ve only just got any note on my NHS records - a “new event” apparently despite it being over 2.5 years ago. But at least there seems to be a code for it now, and my GP has accepted a private diagnosis of MCAS. It really shouldn’t be this hard and require us to go private however. 

I became chronically ill with a variety of neuropathic symptoms starting one week after a single AstraZeneca vaccine which I had at the end of  January 2021. Four years later after constant visits to the GP, and endless blood tests and  X-rays,  all of which were negative,  I have finally been given  a diagnosis,  'Fibromyalgia type chronic pain syndrome, probably vaccine related.' My GP told me that I was not the only one.  They were seeing very many patients with similar sort of symptoms after having had the AstraZeneca vaccine.  He told me to apply for the NHS  vaccine injury compensation.  However,  this will not cover the cost of lifetime care that I now need.   It is not only those who have been injured by developing blood clots who should be suing AstraZeneca, but people who have suffered damage to their peripheral nervous system, who should also be represented in a class action. Other people who have suffered similar type of vaccine injury should be getting together to form a class action of their own.

The trouble is Elizabeth, that the government indemnified the vaccine manufacturers. To bring forward a group action, you first need to find a solicitor willing to represent a product liability/defectiveness claim and so far we have found none. 

The only solicitor doing this is not accepting any more claimants and has only accepted claimants damage due to Vaccine Induced Thrombosis and Thrombocytopenia. 

So, were left with a vaccine damage payment scheme that is ineffective and not fit for purpose and no legal recourse. In effect we're stitched up. 

 

Firstly, there is currently an ongoing case against AstraZeneca for vaccine injury indemnity notwithstanding.  There is also the fact that the government is legally liable for any claims against AZ anyway 

Secondly, I am planning to mount my own case against AstraZeneca and the Govt.  One of my best friends is a solicitor and she is helping me.  If you want to join me, you are welcome to do so.  I do not know precisely what your symptoms are, but since you state that they are neuropathic, you probably have the similar ones to those I have been and still am experiencing, 

I have been doing a lot of research and there is a study published at the end of last year which discusses the findings into an investigation into cases suffering from Post Acute Covid Vaccine Syndrome  PACVS conducted by a German research facility called CellTree GmbH.  The study in question is  Chronic Fatigue and Dysautonomia following COVID-19 Vaccination Is Distinguished from Normal Vaccination Response by Altered Blood Markers - PubMed (nih.gov)

Another article discusses links between the AstraZeneca and Fibromyalgia :Pain associated with COVID-19 vaccination is unrelated to skin biopsy abnormalities - PMC (nih.gov)

I asked my GP  if I could be referred for tests to investigate what the vaccine has done to me.  He told me that the NHS will not fund such research and that if I want to have such tests done I have to have them done privately.   I am going to investigate the possibility of having such tests done.  If you are interested I will keep you posted. 

 

Hi Elizabeth 

I actually know the people in the Cell Trend study and had my blood flown to Germany for testing at their labs in 2021. Unfortunately your GP is right, cell trend is a research laboratory and these tests are recognised by the NHS. I was highly positive for quite a few. 

I do know the people involved in the AZ litigation and I'm afraid it's not quite as plain sailing as you can imagine. Their solicitor has already dropped a ton of the cases and I'm afraid it'll be a hard battle. 

I have multi system issues, neuropathic but also cardiac 

If you'd like to join our private charity support forum you are most welcome, just email us at 

[email protected]

 

Hi Charlet , I would like to join your private support forum and have sent you an email to the email address provided. I look forward to hearing from you

 

On 16/12/2023 at 08:52, Charlet Crichton UK CV said:

After having an adverse reaction to the AstraZeneca vaccine myself in 2021 and becoming chronically unwell, I set up the UK's first support group for people affected. A poll of our members showed that 45% felt extremely dissatisfied with their NHS handling of their adverse reaction. What has your experience been (if any) as either a patient affected or a medical professional when presenting/presented with an adverse reaction to a Covid-19 vaccination ?

Hi

I had the Astra Zeneca vaccine and within a year was hospitalised with DVT and PEs . Is there anyone that could point me to services or provide information if this is link that could be established with the vaccine. It's not something I had thought about until recent findings.

Any help or advice would be greatly appreciated.

On 03/01/2024 at 01:32, Harriet Carroll said:

After my severe and now chronic reaction to a single COVID vaccination in 2021, it was immediately apparent that doctors did not have a clue what they were talking about. My first comment upon calling 111, after learning what my job was (a NHS SARS-CoV-2 scientist at the time), was "you probably know more about this than I do". Not helpful. Several doctors recommended I get another vaccine, many have inferred my symptoms are psychological, many have denied research presented to them (including research I am actively involved in and therefore know a hell of a lot more about than they do), and one doctor refused a referral after 6 months of non-stop debilitating symptoms because "dizziness and nausea are expected after a vaccine". The 2 good NHS doctors I have had both respected my expertise as a scientist in the field, respected my lived experience, and based their decisions on evidence rather than deeming it acceptable that I rot away slowly. The other good doctor I have is private - but why should we have to pay when the NHS has harmed us? 

It took 14 months to find the blood clots in my lungs, even though my D-dimer was elevated and AstraZeneca is a known thrombotic vaccine. I was told repeated D-dimer just showed inflammation. Beyond that being wrong (it's a clot breakdown factor), they did not even offer me treatment for this alleged inflammation. 

~3 years into COVID vaccination and there are still no guidelines based on evidence. Patients are still leading the way with research. Doctors refuse to prescribe mechanistically helpful drugs off-label. They forget that "do no harm" also applies to doing nothing and letting patients suffer due to their ignorance and unwillingness to take risks that highly informed patients consent to. 

In all: Reactions are not understood at all clinically, but even worse, there is a reluctance to learn, even when the patient sitting in front of them is a subject expert. Patients are generally not well provided for, unless they happen to find the unicorn doctor who cares for their patients and listens to research. This breaks the GMC principle of justice - whereby patients should expect to receive equal treatment. The entire system needs dismantling. We need critical thinkers as doctors, with proper scientific training so they know how to tackle a problem. We need specialist clinics who can help patients holistically, instead of by each system. We also need URGENT tests, diagnoses, treatment, and research. This is because it is no use finding a signal for small fibre neuropathy in 10 years time when finally enough patients have been tested. Without up-to-date rapid diagnoses, future vaccinees cannot give informed consent. Patients know the risks, doctors do not. How can anyone make an informed consent in this situation? Finally, all the faffing around pretending that we do not exist only fuels mistrust in the system - why would anyone trust doctors and authorities when we get abandoned, abused, ignored, and left to rot after we took a government and NHS approved vaccine? 

Hi

 

I had DVT and PEs within a year of the vaccine. Is there any help or advice you could give of who to turn to etc to see if there was a link to the vaccine or whether I was just unlucky.

Hi @DKJoker84

You can email [email protected] if you are interested in joining UKCVFamily's support forum for people who have experienced vaccine injury. They may be able to offer some signposting to research regarding your symptoms and services that can offer further support.

On 03/01/2024 at 01:32, Harriet Carroll said:

After my severe and now chronic reaction to a single COVID vaccination in 2021, it was immediately apparent that doctors did not have a clue what they were talking about. My first comment upon calling 111, after learning what my job was (a NHS SARS-CoV-2 scientist at the time), was "you probably know more about this than I do". Not helpful. Several doctors recommended I get another vaccine, many have inferred my symptoms are psychological, many have denied research presented to them (including research I am actively involved in and therefore know a hell of a lot more about than they do), and one doctor refused a referral after 6 months of non-stop debilitating symptoms because "dizziness and nausea are expected after a vaccine". The 2 good NHS doctors I have had both respected my expertise as a scientist in the field, respected my lived experience, and based their decisions on evidence rather than deeming it acceptable that I rot away slowly. The other good doctor I have is private - but why should we have to pay when the NHS has harmed us? 

It took 14 months to find the blood clots in my lungs, even though my D-dimer was elevated and AstraZeneca is a known thrombotic vaccine. I was told repeated D-dimer just showed inflammation. Beyond that being wrong (it's a clot breakdown factor), they did not even offer me treatment for this alleged inflammation. 

~3 years into COVID vaccination and there are still no guidelines based on evidence. Patients are still leading the way with research. Doctors refuse to prescribe mechanistically helpful drugs off-label. They forget that "do no harm" also applies to doing nothing and letting patients suffer due to their ignorance and unwillingness to take risks that highly informed patients consent to. 

In all: Reactions are not understood at all clinically, but even worse, there is a reluctance to learn, even when the patient sitting in front of them is a subject expert. Patients are generally not well provided for, unless they happen to find the unicorn doctor who cares for their patients and listens to research. This breaks the GMC principle of justice - whereby patients should expect to receive equal treatment. The entire system needs dismantling. We need critical thinkers as doctors, with proper scientific training so they know how to tackle a problem. We need specialist clinics who can help patients holistically, instead of by each system. We also need URGENT tests, diagnoses, treatment, and research. This is because it is no use finding a signal for small fibre neuropathy in 10 years time when finally enough patients have been tested. Without up-to-date rapid diagnoses, future vaccinees cannot give informed consent. Patients know the risks, doctors do not. How can anyone make an informed consent in this situation? Finally, all the faffing around pretending that we do not exist only fuels mistrust in the system - why would anyone trust doctors and authorities when we get abandoned, abused, ignored, and left to rot after we took a government and NHS approved vaccine? 

Very interesting read. Astrazeneca 1 in March 2021. Tinnitus commenced within a week. General chest pain began to develop. Astrazeneca 2 in May 2021. Continuing chest pain and tinnitus. CT scanned but nothing found. Now believed microclots not detected at this scan. Admitted to A & E in November 2021, when CT scan detected multiple blood clots on both lungs. I felt that most of the medical staff did not think there was anything wrong with me although one GP did report to MHRA the incident and his obvious concerns. Disappointed at the lack of real interest initially. Consultants reluctant to suggest a cause noting blood clots were 'unprovoked', whatever that was supposed to mean. Reluctance to even suggest blood clots were linked to Astrazeneca vaccine. Subsequently, discovered right carotid artery dissection and thyroid nodules but no link or association being made to Astrazeneca vaccine.

@Mike C unfortunately, this has been the case for many. There has been little in the way of professional curiousity, at least, when a patient presents with new symptoms within a period of Covid vaccination. 

I'm sorry to hear that you have suffered with your health, do you have ongoing support? The link below takes you to our website where you can watch some of our ads and read about others affected

 http://www.ukcvfamily.org/youarenotalone

On 18/12/2023 at 13:58, Eileen Garner said:

After having adverse reactions to 2 Astra Zeneca Covid Vaccines, I am finding that the health professionals I see do not accept that my symptoms are caused by the Vaccines. They are also not interested in researching the possibility that the Covid Vaccines have contributed to symptoms that occurred 4 days after my first Vaccine. Do you have any advice on how I can overcome this reluctance to hear my concerns, and prevent my thoughts and experiences being dismissed?

 

I know how it feels