this must be archive.php

‘Latest developments in MDS diagnostics & treatments’ – a presentation by Dr Beth Payne

Written by

 

Dr Beth Payne is a consultant haematologist at UCLH who specialises in the treatment of MDS and bone marrow failure. This is a recording of a Zoom presentation she gave to the MDS UK Patient Support Group called 'Latest developments in MDS diagnostics & treatments' in July 2023.  

Dr Beth Payne is a consultant haematologist at UCLH

MDS Patient Support

Dr Beth Payne specialises in the treatment of MDS and bone marrow failure. She undertook her PhD at the Dana-Farber Cancer Institute, Harvard Medical School in Boston USA, studying molecular aspects of MDS and AML and ribosomal protein mediated disorders. She was awarded an Advanced Clinician Scientist Fellowship by Cancer Research UK. 

JCVI recommends eligible groups for Autumn 2023 COVID-19 booster programme

Written by

The Joint Committee on Vaccination and Immunisation (JCVI) has announced the eligibility criteria for who can receive a COVID-19 booster vaccine in Autumn 2023. Speaking on behalf of the JCVI, Professor Wei Shen Lim, who leads the committee on COVID-19 immunisation, outlined the objective of the autumn booster initiative.

"The autumn booster programme will continue to focus on those at greatest risk of getting seriously ill. These persons will benefit the most from a booster vaccination."

JCVI has advised on the specific groups to be offered the booster vaccine this Autumn 2023

    • residents in a care home for older adults
    • all adults aged 65 years and over
    • persons aged 6 months to 64 years in a clinical risk group, as laid out in the Immunisation Green Book, COVID-19 chapter (Green Book). (Please note, this applies to all people with MDS and CMML).
    • frontline health and social care workers
    • persons aged 12 to 64 years who are household contacts (as defined in the Green Book) of people with immunosuppression
    • persons aged 16 to 64 years who are carers (as defined in the Green Book) and staff working in care homes for older adults.

For more information from gov.uk

For more detail, follow the link to the official press release from gov.uk   Further advice on the start dates of the programme and the choice of vaccine products for use this autumn will be provided in due course.

Support Joe Thomas running 103 miles for MDS UK!

Written by

 

This is an utterly awesome challenge! On the 5th August Joe will be attempting the North Downs Way 100, a 103 mile (yes 103 mile, 167km!) ultramarathon to raise awareness of and money for MDS UK. 

Pete and Joe Thomas

MDS Patient Support

Last August, Joe’s family were rocked by the news that Joe’s dad, Pete Thomas, was diagnosed with Myelodysplastic Syndromes (MDS).

“Fortunately our family has had incredible support from MDS UK, an extraordinary charity that provides invaluable help and support to patients like my Dad, keeping them abreast of clinical trials and promoting awareness of the disease."

Joe is taking on this amazing challenge to help other MDS  & CMML patients get the support they need from MDS UK Patient Support Group.

North Downs Way 100 -  a 103 mile continuous trail 

The North Downs Way 100 ultramarathon starts in Farnham in the Surrey hills and ends in Ashford in Kent. In addition to covering the distance, Joe will have to tackle an ascent of 11,000 ft (3350m) - more than climbing the largest mountain in England, Scotland, and Wales combined, as well as running through the night in order to try and beat the 30hr cut-off time!

MDS Patient Support

Joe's training

When Joe took on the daunting 103-mile race, he'd only taken part in a 5K run back in 2018. Determined to conquer this new challenge, he embarked on seven months of rigorous training. In February, he completed a full marathon, covering 26.2 miles in just 3 hours and 54 minutes. Not stopping there, Joe further pushed his limits in May, finishing a 50-mile qualifying race in 11 hours and 7 minutes, securing his spot for the ultramarathon on August 5th.

MDS UK extends a heartfelt thank you to Joe Thomas. We are deeply grateful for his efforts in taking on this amazing challenge to support MDS & CMML patients.

Please Donate to support Joe Thomas in his incredible ultramarathon

Covid-19 Treatment Update

Written by

MDS Patient Support

Those of you who have been told you are eligible for Covid treatments, should you test positive for Covid, should have received a recent NHS notification from Sir Stephen Powis about changes to how this treatment will be obtained;

Key points are:

  • This change takes effect from June 27th 2023
  • From this date, you will no longer be automatically contacted by NHS when you register a positive Covid Test on the NHS website
  • Instead, you should contact either
    • your GP
    • 111
    • or your hospital specialist

so that they can consider referring you for an assessment for treatment.

You can also now use tests purchased from a pharmacy or shop.

‘CMML Diagnosis & Treatment’ – a presentation by consultant Dr. Daniel Wiseman

Written by

 

Dr Daniel Wiseman is an Honorary Consultant Haematologist at The Christie, NHS Foundation Trust, Manchester, and has great expertise in treating patients with CMML (Chronic Myelomonocytic Leukemia). This is a recording of a Zoom presentation he gave to the MDS UK Patient Support Group called  'Perspectives on CMML: Diagnosis & Treatment.'  Following the presentation, there are Q&As between Dr. Wiseman and a group of patients.  The session was chaired by Chris Dugmore, Trustee, Volunteer Coordinator and Local Patient Support Ambassador (Essex region).

Dr Daniel Wiseman, Honorary Consultant Haematologist at The Christie, NHS Foundation Trust, Manchester

MDS Patient Support

Dr Daniel Wiseman is an Honorary Consultant Haematologist at The Christie and a Clinician Scientist with a research group based at the CRUK (Cancer Research UK) Manchester Institute/Manchester Cancer Research Centre. He was awarded a Clinician Scientist grant from Bloodwise to research myeloid malignancies, and the Oglesby Leukaemia Clinical Research Fellowship to establish a research programme for Chronic Myelomonocytic Leukaemia (CMML), in Manchester. At the same time he was appointed an Honorary Consultant in Haematology at The Christie, where he leads the Myelodysplasia (MDS) service and is Principle Investigator on several MDS and related clinical trials.

Need help with Zoom? Get free support from AbilityNet

Written by

MDS Patient Support

Easily join Patient Zoom Meetings with free tech support from AbilityNet

At MDS UK, we host online Patient Support Meetings and Specialist Speaker Meetings throughout the year, featuring leading experts in MDS and CMML. As we've moved our meetings to Zoom, we recognise that some people may need help adapting to this technology. That's why we've linked up with with AbilityNet, a charity that provides IT support and guidance, including help with Zoom. Find out more below.

Guides on how to use Zoom recommended by AbilityNet

How to Use Zoom for the first time

This guide, provided by Age UK, gives step-by-step instructions on using Zoom for the first time. It covers all the essential aspects; equipment needed, how to download the Zoom app, and how to join meetings. There are also troubleshooting tips for enabling video and audio, and adjusting settings if needed.

Download 'How to use Zoom for the First Time'

How to use Zoom on a tablet

This guide has step-by-step instructions on how to use Zoom on a tablet.

Download 'How to use Zoom on a tablet'

Easy Steps on how to join your first Zoom meeting

This YouTube video gives you a simple steps on how to join your first Zoom meeting.

Watch 'Easy steps on how to join your first Zoom meeting'

Get free help accessing technology with AbilityNet

AbilityNet, can help you with more than just Zoom.  It's a UK charity that promotes access to digital technology for all. They offer free resources, volunteer support, and expertise on many aspects of digital technology.

 

  • You can call their free Helpline on 0800 048 7642 to get help with using technology or adapting it to meet your needs.
  • Browse their factsheets, blogs, webinars and videos  to get step-by-step instructions on how to use different aspects of technology.
  • My Computer My Way is AbilityNet's unique guide to the many, simple adjustments that can be made on your computer, tablet or smartphone to make them  easier for you to use.
  • Find out about their network of volunteers who can support you remotely or visit you in your own home to help with everyday technology needs.*

*Requesting free tech support from AbilityNet in your own home

If you'd like to access this service, you'll need to complete the Request free IT support form on their website. Every volunteer is DBS checked (Disclosure and Barring Service) and can help with all sorts of information technology challenges. (When you complete the form, please select 'Another charity/organisation' and type in 'MDS UK'. This will help AbilityNet know that we have referred you to them.)

NICE decision: Evusheld treatment not approved for NHS use in the UK

Written by

MDS Patient Support
On May 5th, the National Institute for Health and Care Excellence (NICE) confirmed their decision not to approve Evusheld for use on the NHS in the UK. This means that, currently, Evusheld will not become available on the NHS in the UK.

The reason given is that, although initial clinical trials showed promise in preventing serious Covid infections in immunocompromised and vaccine-nonresponsive people, more recent laboratory studies report that Evusheld may not effectively prevent infection with most of the variants currently circulating.

The report states

“Because of the lack of evidence of clinical effectiveness, the cost-effectiveness estimates for tixagevimab plus cilgavimab (Evusheld) are highly uncertain. They are also likely to be much higher than what NICE considers an acceptable use of NHS resources”.

MDS UK recognises that many of our members will be very disappointed with this outcome and we will be working with other Blood Cancer charities, through the Blood Cancer Alliance, to determine what can be done to improve protection for the affected groups.

*** From 14th June 2023 Evusheld is not available as a Covid treatment in Scotland. For more information click here ***

For more information

Fundraising Successes April 2023

Written by

MDS Patient Support
We want to thank Kulwinder Aujla, Claire Philpott, Andrew Humphries, and Ashleigh Venables for their wonderful fundraising efforts for MDS UK last month. Completing the 2023 London Marathon and Glasgow Kiltwalk (despite the rain!) is truly amazing.

Ashleigh's Glasgow Kiltwalk

Our fundraiser, Ashleigh Venables, braved the rain and joined 13.500 other walkers for a 24-mile Glasgow Kiltwalk on April 30th to support MDS UK, raising over £700 for our charity.  Ashleigh said:

‘It was such a wonderful experience I would love to do it again. Bands played every few miles, Lidl provided great snacks and the cheer squad kept the mood bright despite the rain’  

The Kiltwalk is an annual Scottish event taking place across four cities throughout the summer, offering a variety of distances to cater to everyone. If you would like to join the Aberdeen, Dundee, or Edinburgh walks this summer, follow the link to our Kiltwalk 2023 page for more information.

 

Kully Aujla, Claire Philpott & Andrew Humphries ran the TCS London Marathon 2023 for MDS UK!

 We are so proud of Kully Aujla, Claire Philpott and Andrew Humphries who completed the marathon with excellent times. Andrew finished the race in 2.48 min while Kully and Claire were very close to each other at 4.21 and 4.19.

Kulwinder Aujla (Kully)

Kully ran the marathon in memory of her mum Joginder Sandhu.

The Marathon fell on the date of what would have been my Mum, Joginder Sandhu's, 70th birthday.  I wanted to mark the date and do something special. 

 

MDS Patient Support

Russell supporting Kully in the London Marathon 2022

Claire Philpott

Claire Philpott from Twickenham won a place in this year's marathon.  She came to a Bearcat running club event last year hosted by our patron, Caitlin Limmer and Hugh Brasher, Events director of London Marathon and son of Chris Brasher, co-founder of the marathon and Olympic gold medalist.  Claire had previously entered the ballot 15 times before so was completely delighted when she won the place.  

Claire said:

'Caitlin was the reason I was lucky to be fulfilling a dream last April, it seemed fitting to raise awareness about MDS and hopefully some money to help them continue to support Caitlin and others.' 

Andrew Humphries

Andrew ran the marathon in memory of his grandfather, Basil

Andrew Humphries said: 

My dear grandpa, Basil, lived with Myelodysplasia (MDS) for the last few years of his life. He was a wonderful man who was incredibly sociable speaking to anybody who came across his path, and he would always be able to offer some truly great advice for any problem you might have. I am raising money for the MDS UK Patient Support Group to help this great charity continue their work in raising awareness of MDS.

MDS Patient Support

The great Sir Mo Farah running his final London marathon this year

Thank you 

We would like to extend our heartfelt thanks to all our fundraisers. Your hard work and commitment to MDS Patient Support is greatly appreciated and makes a big difference to the lives of those affected by MDS and CMML.

A special thank you also to our patron Caitlin who met everyone at the expo as she worked on the information point and to Russell Cooke and Ashleigh who went to cheer on the runners in the rain.   If you would like to join any of our cheer squads, do please get in touch via fundraising@mdspatientsupport.org.uk. It makes so much difference to our fundraisers, to have support on the day as they complete their fantastic challenges.

Although we have not been able to secure places for 2024 we would love for those who join the ballot and get an own place to run for MDS UK.  If you'd like to run for for MDS UK or want ask any questions, please do reach out to our Fundraising Manager, Ashleigh Venables, via email at fundraising@mdspatientsupport.org.uk.

 

NHS updates guidance on COVID-19 treatments for those at highest risk (from March 2023)

Written by

MDS Patient Support

The NHS website has updated information from March 2023 on Covid-19 treatments for those at highest risk. The key changes are:

 

• If you have MDS, CMML, or have undergone a stem cell transplant, you'll need to use a rapid lateral flow test issued by the NHS because PCR tests are no longer available.
• You then have to report your COVID-19 rapid lateral flow test result on GOV.UK   (Note - you can't report a result from a privately bought test on GOV.UK)
• If you were previously told that you're eligible for Covid treatments, the NHS should contact you automatically but, if that doesn't happen, you can contact your GP, 111, or hospital specialist for advice.
• It's also worth noting that the drug treatments currently available have changed due to recent evidence about the effectiveness of some previous treatments on the Omicron variant.

You can find more information on the NHS website

In memoriam of Fiona Pirilla

Written by

Fiona_Mamas_Pirilla

Fiona and Mamas

Fiona and I met when we both responded to a meeting set up to see if a patient support group dedicated to MDS was needed.

During this meeting Professor Mufti gave an interesting talk about MDS. At the end he asked for questions or comments, the microphone came to me and I said to the Professor that I was more than the sum of my blood work, that’s why a patient support group would be a good thing. Fiona came and found me in the lunch break and told me she liked what I said and agreed. There began a fruitful friendship that benefitted us both over the years.

The meeting ended with a call for volunteers to form a committee to get the support group off the ground. Fiona and I both volunteered. One other woman called Sharon volunteered too. Committee meetings were challenging affairs. Discussions about what the support group should do took up lots of time, as did setting up all the policies and procedures necessary for a charity. Finally, David Hall took the reins and steered us through the process.

Those first committee meetings weren’t easy. Fiona, Sharon, and I would have a drink together after and talk about the charity as we saw it.  Sharon wasn’t known to mince her words and Fiona and I were no push overs either, we kept going despite the challenges until the charity was set up with a wholistic framework of supporting the whole patient and their carers and families. There have been many people who have given so much of themselves over the years to MDS UK. We stand on the shoulders of these giants who went before us. Fiona has now joined their ranks.

Fiona showed true grit and continued to volunteer, eventually taking on the role of secretary. She maintained her committee membership until she bowed out when she needed to have her stem cell transplant two years ago.

Fiona as Secretary in the committee (Newsletter Issue 2/2012)

Fiona's Travel Tips article (Newsletter Issue 5/2014)

One of my fondest memories of Fiona came when she visited me in my office in Greenwich. I didn’t know her well at the time, she came in and I got up to welcome her and my colleagues laughed, I only came up to her navel! I took her for a meal in the greasy spoon over the road, at that time, I had no idea what a foodie she was - whatever she thought of the place she didn’t say. It was over lunch that we discovered our shared love of sport. Fiona was a highly accomplished basketball player, she was team captain for England and led them to victory in the 1991 Commonwealth Games in Edinburgh. Her old teammates described her as “a lovely shot, a formidable rebounder and someone who always demonstrated great leadership and kindness.”

Fiona was always immaculately turned out and always looked elegant. She was beautiful inside and out, she was also a highflyer in her specialised field of work. She was one of our MDS experts and her answers to those recently diagnosed carried more weight. She befriended many people through the online forums, Zoom meetings and Facebook groups. All who received a reply from her were reassured by her measured response.

Here are some words that people have said about “Our Fiona”:
Courageous
Beautiful
Kind
Funny
Always up for doing something silly
Organised
Professional
Strong
Caring
Amazingly crazy
Diplomatic
Inspirational

This list could go on and on and I’m sure those who knew her will have other words.

When she met Mamas a few new words came into her life and those were loving husband. They were soulmates and enjoyed a lovely life despite illnesses and life not being fair. They both lent on each other and it was a joy to watch their relationship from afar.

One of our last meetings before the pandemic hit was very memorable for different reasons. A few of us had gone into a nearby pub. We managed to get a table at the top of a narrow steep staircase, at one point a very drunk businessman came out of the loo with his flies open, which I noticed and nodded to Fiona. How we giggled! He found the stairs and promptly slid all the way down them ending in a heap at the bottom. Fiona as quick as a flash said, “should’ve taken more water with it.”

When Fiona told me her very sad news, I like many of her friends and family, was gutted. She had been through so much and just kept going. The thought of her slipping away was a horrible one. I sent her little messages to encourage and cheer her. One of the last ones I sent said “if someone isn’t social distancing from you, just fart” She thought that was very funny. I also sent her this beautiful poem which she told me gave her comfort.

And You Held Me

and you held me and there were no words
and there was no time and you held me
and there was only wanting and
being held and being filled with wanting
and I was nothing but letting go
and being held
and there were no words and there
needed to be no words
and there was no terror  only stillness
and I was wanting nothing and
it was fullness and it was like aching for God
and it was touch and warmth and
darkness and no time and no words and we flowed
and I flowed and I was not empty
and I was given up to the dark and
in the darkness I was not lost
and the wanting was like fullness and I could
hardly hold it and I was held and
you were dark and warm and without time and
without words and you held me

Janet Morley

 

Fiona was just a natural at everything she did. MDS UK will be worse off for not having her immense knowledge and strength behind it. She set MDS UK as a donation invitation for her birthday in February. She has done the same for her funeral and asked for no flowers. Even as she was dying, she was thinking of all those newly diagnosed and wanting to make sure MDS UK remained a vital lifeline. The money that will be raised in Fiona’s memory will help continue the charities work until hopefully one day we find a cure.

Our thoughts and prayers remain with Mamas and the family, in the UK, and Cyprus (which she loved so much), as well as all the friends, basket-ball crowd and former colleagues.

 

I think this quote sums Fiona up “when you were born, you cried, and the world rejoiced. Live your life so that when you die, the world cries and you rejoice!”

Written by our good friend, MDS UK committee member Reverend Kes Grant.
On behalf of all of us at MDS UK.
If you wish to donate to MDS UK in Fiona's memory please follow this link:

https://fionapirilla.muchloved.com/