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How do COVID-19 vaccines work? Watch these animations!

Posted on 16/11/2021 at 7:25 am.

A global vaccination drive against Covid-19 is underway, with governments, scientific experts, epidemiologists, and voluntary organisations all trying to get as many people immunised as possible. However, vaccine-hesitancy is still being noted among many people.

So, the makers of the hit animated series Family Guy have produced a public service announcement and raise awareness about the vaccination campaign, and shared their three minute video on their official account on Twitter. Share this on your social media accounts and spread the science in very simple words!

Learn more about COVID-19 Vaccines and the 3rd dose now available to blood cancer patients >

Dr. Rob Swanda gives a brief overview of how the Pfizer/BioNTech or Moderna mRNA vaccines work.

He says in his YouTube Channel

There is a lot more information I wanted to cover, such as the immunity length over time, side effects, and non-mRNA vaccine technologies. We could discuss this for hours. But, the focus here is on the technology itself.

I do use some technical terms, please find them defined below. Im happy to hear questions and comments. Thank you for taking a little time to learn about RNA! ?

(technical terms: 3’UTR/5’UTR = untranslated regions of the mRNA that do not code for the protein but aid in stability. Lipid = fat molecule. Ribosome = cell machinery that makes proteins from mRNA. Macrophage = a white blood cell in our body that responds to infection. Antigen = foreign protein that antibodies detect.)

Learn more about COVID-19 Vaccines and how effective they are on MDS Patients >

Join Team MDS at Ride London-Essex 100 for the experience of a lifetime

Posted on 10/11/2021 at 2:11 pm.

Written by Manuela Rotstein

We wanted you to be the first to hear that registration is now open for RideLondon and we have 15 rider places this year!

This year's edition will take place on Sunday 29 May 2022.

Ride the RideLondon-Essex 100 – a 100-mile challenge on the same closed roads as the professionals, with the added incentive of raising money to help MDS UK!

Important:

We have only 15 places!
While registering you pledge to raise a minimum of £650 for MDS UK Patient Support Group through your participation in the event.

Repair MDS: A new approach to treat lower-risk MDS patients

Posted on 07/11/2021 at 2:54 pm.

Written by Manuela Rotstein

Called REPAIR-MDS (Repurposed drugs to improve haematological responses in Myelodysplastic Syndrome), the trial will test a number of treatments designed to improve the formation of healthy blood cells, reducing or reversing life-limiting deficiencies in red blood cells.

The project is a national effort by the UK MDS research community and will recruit patients from across the UK.

The trial was developed by the National Cancer Research Institute (NCRI) MDS clinical studies sub-group and has arisen from research carried out in the School of Biosciences and the School of Medical and Dental Sciences at the University of Birmingham led by Professor Chris Bunce. It will be carried out in collaboration with Queen Elizabeth Hospital Birmingham.

The funding of REPAIR-MDS by Blood Cancer UK has been made possible by a donation made in open competition to the charity from the Jon Moulton Charity Trust.

This is REALLY big treatment news for patients – for many reasons:

A new clinical trial option for lower-risk MDS patients
Aim: to help the body create more red blood cells – reducing, or even avoiding need for transfusions – possibly more benefits
A trial open to MDS patients truly representative of the condition, including typical age group of around 75 yrs old
It uses known drugs, which have been used for years in other conditions – therefore deemed safe
Oral formulation – much appreciated by patients who are already regularly pricked by needles for transfusions and blood tests
There is no placebo (sugar pill) arm to this trial – meaning all patients will be receiving a treatment that could help (2 versions are being tested)
It may turn low-risk MDS into a more manageable form of the condition, improving quality of life – a very important factor for older patients especially, in current absence of a safe enough curative option.

‘Previous research has shown that the drugs bezafibrate (a cholesterol-lowering drug) and medroxyprogesterone acetate (a type of contraception), “BaP” when put together, benefit people with AML who are unable to receive chemotherapy.

However, when given to people who were elderly and more frail, the drug combination could only be given at a low dose, otherwise it caused unwanted side effects. As the treatment had to be given at such a low dose, it was not as good as destroying cancer cells. In comparison, this drug combination has been shown to be well tolerated and successful at destroying cancer cells in children when they receive a higher dose. In a recent study, Professor Chris Bunce, Dr Farhat Khanim and their team looked at the effect of adding an additional drug to the BaP treatment and looked at what this did to AML cells in the lab. They found that adding valproic acid, a common drug used for people with epilepsy, could increase the anti-cancer effect of the other drugs, without having to increase the dose of BaP.

They now want to test this treatment, known as VBaP, in elderly people with AML to see how much benefit they get from the treatment.

The team also want to trial this drug combination in people with myelodysplastic syndrome (MDS), a blood cancer that can progress onto AML.

They think the treatment may improve effects of the disease for people with MDS and may also reduce the number of people who go on to develop AML.’

The MDS UK patient community provided PPI, Patient and Public Involvement work, for this trial.

In 2020, MDS UK, working with the research teams in Birmingham and Warwick, designed a PPI methodology and sequence of events, making use of 4 of our regional MDS patient groups across the country.

We presented the concept of this treatment option to the 4 groups, in a focus group setting, guided by the respective clinical expert in each area.

Each group was given a description of the trial design, the rationale, the compounds tested, the potential side-effects and the expected effect in MDS.

Patients were asked about understanding, acceptance, concerns, opinions of the whole concept.

They all had opportunities to ask any questions.

Each group and each person were then asked a set of specific questions, to also collate their opinions numerically.

The groups participating were representative of the typical MDS patient, in terms of age and experience of the condition.

Some patients had only recently joined our support group, whilst others had been members for a long time.

We concentrated on opinions and answers from the lower-risk MDS patients who would be potential candidates for this trial.

The comments, answers to specific questions and queries were then used by the research team to shape the trial protocol and start to construct the patient information materials.

The PIS (Patient Information Sheets) were then further revised by our expert patient advocates, to ensure readability, clarity, and inclusion of answers to all potential queries.

Several iterations were required to ensure a good end product, which satisfied everyone’s requirements, and resulted in much improved documents.

The hard work paid off, as the PPI team was commended by the Ethics board for the robust PPI work completed, and the fact that a PPI representative was present at the Ethics meeting, alongside a scientist and a clinician.

As a small charity, we are so very proud of our patient community and grateful to them for their time, dedication and efforts connected to this work, and PPI work in general.

As a charity, our mission is to not only support patients and caregivers, but also to educate and empower, giving them the option to become advocates for their condition.

As a rarer cancer, unknown to the general population, and poorly understood by GP’s, this is an absolute necessity to strengthen the voice of this group of people, where the median age at diagnosis is 75 years old.

This work, collaboration and efforts are ensuring true patient voice, proper attention to Quality of Life, and clearest, most accessible patient information, made with relevant patients, for patients.

Ultimately, such work may lead to faster access to the most helpful treatments.

As ever, we thank our scientific board of clinical experts for advice and guidance on this work.

A further, more detailed update on this PPI work will follow. Stay tuned!

Thank you to all involved in making this trial a reality for MDS patients

MDS patients after COVID-19 restrictions lifting: “I only see the risk getting greater with rising cases and people being less cautious”

Posted on 28/10/2021 at 2:36 pm.

Written by Manuela Rotstein

The end of shielding has left every single MDS patient anxious. In addition, the lack of awareness among the general public about their vulnerability has devastating consequences.

Blood cancer patients become prisoners in their own homes, as the outside world has stopped using masks and no longer abides by the social distancing measures. On top of this, the situation causes severe practical and even financial issues for many who are being pressured to return to work.

Daniel, an MDS patient and MDS UK member wrote to us:

"I am very worried about potentially returning to a workplace and mixing amongst people who no longer have to compulsorily wear a face mask or social distance"

Read Daniel's full story >

Rebecca, one of our members, wrote to us this week on this issue:

“The end of shielding is a worry in so many ways, the few times I have been out to appointments or local places so many are not wearing masks which I understand as its now personal choice but there is a lack of understanding for those who wish to continue wearing masks. As I waited in line for my flu jab a gentleman with no mask stood right behind me and i had to ask him to move back a bit out of my personal space. I had hoped recent times would make people more aware that some in the community are more vulnerable to infections and to give people space where possible.

For my family, the fact that I live with the uncertainty of how well vaccines work in patients like me, post stem cell transplant, is a great strain. Not being able to do more, go to more places and socialise more, for me this gives the feeling of guilt and many still don't understand why we have to be extra careful.

I lost my job when first having to shield partly due to having to shield and partly due to my health, I can't imagine how those vulnerable feel with the possibility of having to decide to go back to work and risking health or losing their income.

From a practical side, I live in Cumbria and my specialist consultants are in London. This has meant i have not been able to go to face to face appointments for nearly two years, because of the risk of covid with travelling and staying overnight in a hotel.

This makes it so difficult when different hospitals don't have access to other hospitals' patient information, results or the means to get tests or specialist appointments booked quickly. I only see the risk as getting greater with rising cases and people being less cautious.

As someone who is now 5 years post stem cell transplant, with multiple health issues that put me at risk until vaccine efficiency is better known, I feel stuck: unable to see friends and loved ones unless outside at unbusy places, unable to go to social or leisure events, unable to go shopping anywhere busy such as supermarkets or clothing stores, the list goes on but I will be 'shielding' until we know more.”

Rebecca contacted her MP, Tim Farron, who then raised the issue with the then Secretary of State.

Disappointedly, Mr. NADHIM ZAHAWI MP, Minister for COVID Vaccine Deployment, responded with just a standard answer:
"The Government has advised that, from 1 April, those who are clinically extremely vulnerable do not need to shield. This is because, since the national restrictions and shielding measures were introduced, the number of COVID-19 cases has fallen considerably across all parts of the country and prevalence rates are now significantly lower.”

What’s your MDS type? Read patients stories & watch the animations

Posted on 24/10/2021 at 6:54 pm.

Written by Manuela Rotstein

My advice to anyone in a similar position is to follow up on any concerns and don’t hesitate to push to ensure that you get properly tested.

I was given a bone marrow test very quickly and only a week later I was told the results. In my case, I was diagnosed with MDS-EB2 (EB referring to excess so-called blast cells), a form of MDS at the high-risk end of the MDS spectrum, not far from becoming acute myeloid leukaemia. This was confirmed by a second bone marrow test shortly after. I was very glad to have clarity about my diagnosis early. It made it much easier for us to plan how best to proceed.

I was identified as a strong candidate for a bone marrow transplant. However, I was not able to have one from a family member, so they had to find an unrelated potential donor. I was extremely lucky, because they quickly identified a donor who appeared to be a perfect match and I had my transplant on May 12 2021.

“Since then – says Stephen – I’ve had one or two minor issues, but the doctors have generally been extremely pleased with my progress, and I’m looking forward to the future with considerable optimism, thanks to the extraordinary team at King’s and my anonymous donor.

I joined the MDS Support Group almost as soon as I was diagnosed. I find it incredibly helpful, both as a source of comradeship, friendship and support via the network of fellow-patients (with both similar and different MDS sub-types) but also as a way of accessing the most expert and up-to-date advice and information about our condition and important related issues, such as Covid and vaccinations.

I would wholeheartedly recommend anyone who has been diagnosed themselves or who has a loved one with MDS to join our network.“

MDS-RS: Simon Wilkes’ Story

As a scientist I had a bit of an advantage so I was able to understand the science behind my diagnosis quite easily. I also could read up about it in the scientific literature.

I hadn’t directly encountered anyone else who had MDS until I took part in one of the MDS Patient Support meetings.

I don’t think I have met anyone yet with my specific subtype. I do have a colleague who works at the same university as me who is a Prof specialising in MDS research and they were great to talk to following my diagnosis.

MDS del q5: Jacqui Warren’s Story

This group has been extremely valuable to me with advice and support on my journey to transplant and after.

I have met people with the same subtype as myself online and a particular one in person whom I first met in at the Birmingham group meeting (as it turned out the only one before lockdown) we became firm friends and have supported each other on our journeys mine being SCT last June and her’s SCT last September this contact has been invaluable to me and still is.

I have need two DLI s for a relapse in my transplant and have had a very rough few months this year with my blood counts all dropping and my bone marrow be declared empty also a very nasty bout of pneumonia which I had nearly 5 weeks in hospital for until it was conquered. But with the care and support of the transplant team at the QE Birmingham my counts started to rise and my latest BMB showed solid remission.

MDS with ring sideroblasts (MDS-RS): Richard Andrews

My MDS sub-type is MDS(RARS) Trichomy 8.

I was fortunate in that my referral, following an unrelated blood test, took only a few weeks. My referral was to the Haematology department of the RD&E hospital in Exeter where a lumbar puncture procedure confirmed the suspected MDS condition.

I received excellent advice and also had the advantage of picking up some MDS UK reading material, which helped enormously. My wife and I are members of the MDS UK Patient Support group (both nationally and through our newly formed South West group) and have found the opportunity to meet others, mainly by Zoom due to the Covid pandemic, extremely useful.

I’m afraid that I don’t ‘do’ social media, however, I will chase up my local MP, who owes me a response from months ago! The World Awareness Day initiative sounds like a great idea.

SOAP Study: How effective is the COVID Vaccine for MDS patients?

Posted on 17/10/2021 at 8:00 am.

Written by Manuela Rotstein

Regarding antibodies, all healthy volunteers produced antibodies as a result of having been vaccinated.

Among MDS patients, all those vaccinated with the Pfizer vaccine generated antibodies, whereas 5 MDS patients vaccinated with the Oxford vaccine didn't. The specific results for each brand of the vaccines, however, are not conclusive due to the small numbers of patients in each vaccine group.

Were these antibodies effective against the different variants of the COVID-19 virus?

In other words, when people created antibodies, whether by way of the Pfizer or the Oxford vaccine, were these able to neutralise the virus?

In the case of some MDS patients, these antibodies did not seem as effective as in healthy volunteers, in particular to offer protection against the Delta variant.

T-Cells are another element of our immune system.

20 out of 21 healthy volunteers produced T-cells as a result of having been vaccinated.

Among MDS patients, 10 out of 14 patients vaccinated with the Pfizer vaccine generated T-cells, and 12 out of 17 MDS patients vaccinated with the Oxford vaccine generated T-cells, a very similar response for both vaccines against the Delta variant.

Combining antibody and T-cell response

In the case of some MDS patients, 60% of MDS patients were shown to have both an antibody response AND a T-cell response to vaccines, as compared with 95% of healthy volunteers.

Some patients will have only antibody response, whereas some will have only T-cell response. When you look at this single response (either antibodies or T-cells ) up to 86% of patients have generated a response.

Shielding for the Clinically Extremely Vulnerable has ended. What is the impact on working age blood cancer patients?

Posted on 10/10/2021 at 2:37 pm.

Written by Manuela Rotstein

The repercussions of the government’s decision to end the shielding programme for Clinically Extremely Vulnerable (CEV) people are severe and multi-facetted.

Most of the Clinically Extremely Vulnerable group, such as, for example, blood cancer patients, are still at very high risk of contracting COVID-19, as early research has indicated that the vaccines may not be as efficient for these patients as for the general healthy population.

For most CEV people, catching COVID-19 could prove fatal.

This leaves CEV patients utterly devastated and anxious. Not only are they virtual prisoners in their own homes, as the outside world has stopped using masks and no longer abides by the social distancing measures, but the decision is now causing severe practical and financial issues for many who are being pressured to return to work by employers and organisations who may not understand the full risks involved.

One of our members (we’ll call him Daniel), who wrote to us this week on this issue, would very much like some answers. In his own words:

“I am a 56-year-old unemployed blood cancer patient from Brighton registered as CEV, living with, and part time carer for, my 86-year-old father who is also vulnerable and has health issues.

Me and my father have shielded as much as possible throughout the Covid pandemic. I have been claiming Universal Credit since June 2020.

However, as government shielding has now ended, I am being pressed by the DWP to make myself available for work again immediately or lose my benefit. They have said that the only thing that can take the pressure off is to be declared unfit for work by my GP, which is difficult as I am a watch and wait patient who is currently not physically unwell with my condition. But myself and my father are still extremely vulnerable to Covid.

I am very worried about potentially returning to a workplace and mixing amongst people who no longer have to compulsorily wear a face mask or social distance.”

We urged Daniel to contact his MP, Caroline Lucas, in the first instance, who responded immediately to his call for help: “I am dismayed at what the Government is putting you and so many other people through and am raising my concerns with Ministers.

It is unfair of the Government to effectively push you into asking your GP to say you are unfit for work when that is not the case – and when the reality is you are vulnerable to Covid.”

As a charity and support group for those living with a rarer blood cancer, and working alongside our umbrella organisations, the Blood Cancer Alliance, and Cancer52, we call on all MPs to raise this topic in parliament with ministers. We also call on the APPG for Blood Cancer to assist in this task.

Those classified as CEV should not be put under pressure to effectively risk their lives and/or those of the people they care for.

Help us explain the situation to ministers, employers and the DWP.

Brighton Marathon and 10k Race 2022: Calling all Runners!

Posted on 30/09/2021 at 2:32 pm.

Written by Manuela Rotstein

New survey to evaluate antibody response in individuals with cancer

Posted on 23/09/2021 at 2:36 pm.

Written by Manuela Rotstein

The National COVID Cancer Survey is evaluating antibody tests in individuals with cancer. This is Phase 1 of a large nationwide NHS England project. It will evaluate finger prick COVID antibody testing in 10,000 individuals with cancer.

Who is currently eligible to enter this trial?

If you live in England, have been diagnosed with cancer in the last year, or are on anti-cancer treatment, you can enrol directly to participate.

For MDS, patients on ‘anti-cancer’ treatments means people who are on either:

azacytidine/Vidaza injections
lenalidomide/Revlimid (for Del 5q type of MDS)
other form of chemotherapy

Also eligible are MDS patients who are post Stem cell transplant.

Who is currently NOT eligible to take part?

Patients on :

Watch & Wait
Transfusions (red blood cells or platelets)
EPO/erythropoietin injections (to boost red blood cell production)
GCSF injections (to boost white blood cell production)

We have raised the issue with NHS England, that many MDS patients are of course immune-compromised, regardless of risk-group and/or type of treatment received.

Many patients on transfusions, EPO, GCSF specifically will have lower, or even extremely low white blood cell counts and neutrophils, putting them at great risk of any infections.

These comments have been noted by NHS England now, who will review the eligibility criteria if this first phase of the project proves useful and effective.

We have been assured of ongoing discussions.

Be our hero! Join our 20:20 campaign and fundraise for MDS UK

Posted on 08/09/2021 at 3:29 pm.

Written by Manuela Rotstein

You can start and finish anytime within this time frame, doing 20 of the same challenges or 20 different challenges. Some examples of the inventive fundraising challenges last year were riding a bike, walking, painting, writing poems, eating 20 pancakes, face painting, car washing, assault course, lego making, disco dancing and dressing up.

Donna, one of our superstars fundraisers told us:

I did my challenges with my husband and then 12 year old twin boys. It gave us a purpose for 20 days to come together as a family and we had so much fun and laughter and it brought us closer together as a family.

If you don’t fancy doing 20 challenges, following on from the Olympics this year, supporters can do one challenge and then ‘Pass the Baton on’ for the next person to do their challenge!

20 minutes of knitting per day for 20 days
Walking 20 minutes a day for 20 days
Selling 20 2nd hand books
Invite 20 friends to a Fundraising Quiz Night on Zoom
Selling 20 random items
Surviving 20 days without chocolate challenge
Taking 20 pictures of my dog in 20 days
Running 20 miles
Learn to crochet in 20 days challenge
Invite 20 friends to a Fundraising Dance Lesson on Zoom
Baking 20 cakes for sale in 20 days
Posting 20 facts about MDS on Facebook challenge
Invite 20 friends to a Fundraising Book Club Evening on Zoom
Making 20 cards for sale in 20 days
20 minutes a day of colouring mandalas for 20 days
Invite 20 friends to a Fundraising Auction on Zoom
Surviving 20 days without beer challenge
Cycling 20 miles 20 times
Reading 20 books in two months
Invite 20 friends to a Fundraising Singing Lesson on Zoom

Why Must You Get Vaccinated? 'Family Guy' Explains In Viral Video

How do the Pfizer/BioNTech or Moderna mRNA vaccines work? Dr. Rob Swanda explains it all

Latest News

RIDELONDON IS BACK!

RideLondon: the world's greatest festival of cycling

If you'd like to take this challenge and fundraise for us, please send us an email!

Latest News

Repair-MDS: a new clinical trial for lower risk MDS patients

Comments by MDS UK:

The details of the trial and the compounds tested (courtesy of Prof Bunce and BCUK):

The Patient and Public Involvement (PPI) Work - led by MDS UK

If you approve of such PPI work by MDS UK, please know that you can support future similar projects by making any donation to MDS UK. The funds cover the costs of organising, liaising, and moderating such work. Thank you.

Learn more

Latest News

MDS patients do not know to which extent they are still extremely vulnerable to the virus

Blood cancer patients: prisoners in their own homes

Rebecca's story

"I live with the uncertainty of how well vaccines work in patients like me"

Please send us your story, we need as much evidence as possible.

Help us explain the situation to ministers, employers and the DWP.

Latest News

Learn your MDS Type!

Godfrey Bell’ Story

Like Godfrey, a third of the patients who contact us do not know their MDS sub-type

Share these stories and animations with doctors, patients and the public!

MDS-EB: Stephen Andrews’s Story

Like Stephen, lots of MDS patients can benefit from knowing their MDS sub-type

Share these stories and animations with doctors, patients and the public!

MDS-RS: Simon Wilkes’ Story

MDS SLD: Peter Roberston’s Story

MDS del q5: Jacqui Warren’s Story

Like Jacqui, lots of MDS patients can benefit from knowing their MDS sub-type

Share these stories and animations with doctors, patients and the public!

MDS with ring sideroblasts (MDS-RS): Richard Andrews

MDS-MLD: Suzanne McWilliams’ Story

And yet another MDS Type: Unclassified MDS

Latest News

Dr Austin Kulasekararaj, from King’s College Hospital, presented a preliminary analysis of the results

The study's patient population (click to enlarge)

Watch Dr. Austin Kulasekararaj presenting a preliminary analysis of the SOAP Study results

Have MDS patients produced antibodies as a result of having been vaccinated?

Were these antibodies effective against the different variants of the COVID-19 virus?

Dr. Austin Kulasekararaj

"In one way or the other, there is a protection offered to reduce the risk of complications associated with COVID-19"

Have MDS patients produced T-Cells as a result of having been vaccinated?

Combining antibody and T-cell response

What are the practical implications for MDS patients?

The study will continue to monitor this group of patients prior to their third vaccine and post their vaccination.

Latest News

End of shielding – Risk, anxiety and financial impact

What can the government do to prevent blood cancer patients being pressured to return to work?

Caroline Lucas: "It is unfair to push you into asking your GP to say you are unfit for work, when the reality is you are vulnerable to Covid"

Those classified as CEV should not be put under pressure to effectively risk their lives and/or those of the people they care for.

Help us explain the situation to ministers, employers and the DWP.

Latest News

We are excited to announce that we have free places for the Brighton Marathon Weekend 2022

When: 10.04.2022

Where: through Brighton city centre, along its glorious seafront

Entry fee: free!

Minimum fundraising target: full marathon £350 - 10k race £150

Interested? 3 steps to Register

Hurry up, 1 marathon place has been claimed already!

Not a runner yet?

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