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Nova Magazine Spotlights ME

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Nova Magazine has published an excellent article by Will and Kathryn Woodvine featuring their teenage son Alex, who is severely ill with Myalgic Encephalomyelitis, and their amazing friend Arry’s Mountain Mayhem 100 miles in 24 hours off road cycle challenge fundraising for Invest in ME Research.

The article is in the SpotLight section on page 26 of the May 2019 issue of Nova Magazine. You can find it in flipbook format on the home page of the magazine’s website, and also share the text directly from this webpage:
novamagazine.co.uk/invest-in-m-e/

Titled Invest in M.E, the piece also features One Stupid Dot, the poem by musician Mama Chill (aka Stacy Hart of Team Let’s Do It for ME) which has struck a chord with so many people and was performed on What’s Up TV. You can find the poem on Stacy’s Runnin On Empty M.E awareness page along with her music videos for ME Awareness: officialrunninonempty.com/m-e-2

Nova Magazine is also delivered free to every household in Newport, Shropshire and the surrounding area, so this is wonderful awareness and Kathryn is absolutely delighted, “Hopefully it’ll raise a lot of ME awareness and maybe even a donation or two! Thanks Teresa for organising such a fab article 💙”

Please feel free to share widely during May ME Awareness Month.

Arry is fundraising at: justgiving.com/fundraising/wwwinvestinmeorg



Thank you for supporting Invest in ME Research!

https://twitter.com/LetsDoIt4ME/status/1121350158736875520

Severe ME day 2017; Sophia Mirza, inflammation of the brain and spinal cord and the role of the gut

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Severe ME day is an initiative of the 25% ME group for the severely affected. 


It is held annually on 8th August to commemorate Sophia Mirza’s birthday and it’s purpose is to remember and raise awareness of those deceased and severely affected by ME. Sophia Mirza (1973 – 2005) died in distressing  circumstances in November 2005.  The coroner was specific about the medical cause of Sophia’s death and it was recorded as 1a) acute anuric renal failure; 1b) CFS. The second cause was recorded as including dorsal root ganglionitis. Sophia died as a result of acute renal failure arising as a result of ME/CFS.

However there have been a few members of the ME community who’ve seemed keen to place the cause of death on acute anuric renal failure as a result of dehydration. These people are obviously ignorant of the fact that death in dehydration is caused by brain swelling, not renal failure. Sophia’s brain was perfectly normal under standard autopsy examination with no signs of swelling. Her death was as a result of end organ failure as the result of ME.This is not an unheard of before phenomenon in ME/CFS either.

It wasn’t, as has also been claimed, the first known death as the result of ME/CFS.  ME is described as “benign” but this only means non-fatal in the short term. Even though the pathology precipitating death varies widely, as early as 1957, Dr Andrew Lachlan Wallis reported the post-mortem histopathology on a female from Cumbria who had died of ME; the report can be found in Wallis’ Doctoral Thesis (held at the University of Edinburgh and essential reading for anyone with an interest in ME/CFS; see also “Vade Mecum” by E. Marshall and M. Williams; Co-Cure ACT: 29th June 2005, which contains a summary of the thesis). The histopathology report states:

“There are in the entire diencephalon, particularly around the third ventricle, numerous small haemorrhages, which extend into the adjacent parts of the mid-brain. Similar haemorrhages can be seen in the corpora mamillare. The haemorrhages are mostly around the small vessels but some are also to be seen in the free tissue. This is a significant finding”.

In ME/CFS, males die predominantly from cardiac failure and females die predominantly from neurological complications, sometimes manifesting as tumours, and both sexes may die from pancreatitis. A memorial list can be found on the CFIDS website.

The secondary recorded cause of death in Sophia Mirza’s case was dorsal root ganglionitis. This is not surprising as inflammation of the brain and spinal cord is an important part of the ME pathology and indeed what the name Myalgic Encephalomyeitis (M.E) stands for;

  • My = muscle
  • Algic = pain
  • Encephalo = brain
  • Mye = spinal cord
  • Itis = inflammation

Much of this information I gathered from the document “INQUEST IMPLICATIONS? By Eileen Marshall and Margaret Williams, 16th June 2006” which concludes 

“To deny the existence of inflammation in ME/CFS is to deny reality, for which some UK psychiatrists (and those members of the medical profession who support their ill-founded notions without bothering to consider the actual evidence) are notorious.

The only way forward is biomedical research, but it seems that in the UK, science and humanity count for nothing when dealing with those blighted by the devastation of ME/CFS. 

This was concisely exemplified by Professor Peter White’s remarks to Dr Vance Spence at the third Oral Evidence Session of the Gibson Parliamentary Inquiry into ME/CFS on 7th June 2006, which were words to the effect that:
 “If WE hadn’t got the money, do you really think that the MRC would have given any money to YOU?”.

It seems inevitable that there will be many more cases like that of Sophia Mirza.”

However Eileen Marshall and Margaret Williams underestimated the strength, conviction and perseverance of the ME/CFS community!

That’s enough about the dying, now let’s turn our attention to those who are currently surviving severe ME/CFS.

One of IiMER’s foundation research projects, “A ROLE FOR A LEAKY GUT AND THE INTESTINAL MICROBIOTA IN THE PATHOPHYSIOLOGY OF MYALGIC ENCEPHALOMYELITIS”, aim was to find out weather there were any apparent changes in the intestinal barrier function and/or microbiota of people with ME and whether microbe-driven inflammatory responses can provide an explanation for the pathophysiology of ME. It is the foundation research project in their proposal for a research and development facility which could lead to a UK Centre of Excellence for ME in Norfolk.

Autoimmune reactions lead to inflammation, increased permeability of blood vessels (as has been found in ME patients, described above) and migration of lymphocytes to sites of injury. Microglia within the brain can be primed during chronic inflammatory diseases, but can then induce inflammation in the brain when they are triggered by a second inflammatory challenge such as a systemic microbial infection. This raises the possibility that the damaging neuro-inflammation seen during ME may be triggered by systemic infections.

The gastrointestinal tract contains a microbiota consisting of a vast number of bacteria and viruses. The microbiota can influence intestinal barrier function and host defence against microbial challenge. Changes in the microbiota can cause local and systemic chronic inflammation.

This research has included people who are severely affected. It is being led by Professor Simon Carding at the Norfolk institute of food research/ UEA. As there has been no ME specialist in Norfolk since 2007 (something I know only too well as I live in the area and have had to cope without a local specialist consultant for the past decade) and the research requires a named doctor, patients providing samples for the research are under the care of Dr. Amolak Bansal of Epsom and St. Helier NHS Trust in Surrey. The researchers from Norfolk have been traveling down to Surrey to take samples from the house/bed bound patients and from house-matched healty controls to filter out what’s shared in the microbiome from shared environment.

There are now two more research projects undergo in IiMER’s Gut research project. Find out more

What’s more the whole of the first £100,000 of the first foundation research project was raised by “Let’s do it for ME”, a patient driven campaign to raise funds for biomedical research into ME/CFS. Many of the patients who raised it are severely affected themselves. The two later research projects are being funded jointly by IiMER’s LDIFME campaign and the universities involved.

References 

Any views expressed in this blog post are those of the blog author R. Amor and not necessarily those of IiMER or LDIFME 

Severe ME day 2017; Case study; Hay Green 

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Hay Green, author of “101 tips for coping with ME” and also runs the Facebook page named after it, kindly allowed me to interview her for Severe ME day. She has recently deteriorated to being severely affected, having been mildly and then moderately affected since 2007.

Back then she was like any other woman in their early 20s with a zest for life, plenty of friends and a career she loved. She would go to the gym after work, them home to cook. She was looking forward to everything a 20 year old expects in life – developing her career, marriage, children. However in 2011 at the age of 23, after a bout of tonsillitis, she was diagnosed with ME. She’d been suffering from it, mildly and unknowingly, since 2007. Life was never the same again 

She is now 18-20 hours a day bedbound. She manages to leave her house only about once a month. Usually for medical appointments which she says are a lifeline. She is fortunate in having a very sympathetic and understanding GP which is the most helpful thing for her. Unfortunately there is little apart from symptomatic relief her GP can offer her though as we don’t currently know the cause or have cures for ME. On other occasions, if she hasn’t a medical appointment, she might leave the house to do something fun like a short visit to a garden centre or to feed the ducks 

Her symptoms are; 

  • Severe Muscle, joint and bone pain 
  • Vertigo / nausea 
  • Orthostatic intolerance 
  • Tremor of limbs and hands 
  • Post-exertional malaise 
  • Severe Fatigue 
  • Reverse Sleep disorder 
  • Muscle weakness and fatigue 
  • Parasthesia (Parasthesia is numbness and tingling in the hands and feet)

She is on morphine for pain and uses a commode as she suffers from bladder issues 

Despite all this Hay remains upbeat. To occupy herself whilst in bed she reads, writes, meditates, manages her facebook page “101 tips for coping with M.E” which has over 1.5k followers and keeps five cats; 3 adults and two kittens. Like many women with ME she has been forced to accept she will never have children so her cats are her closest thing to them. She says they’re much more independent than children. Her female cat Mia is particularly intuitive and will come to lie at Hay’s feet for hours when she is crashing. When Hay’s been very bad she has even according to Hay “sat on my pillow and put her paw on my head as if to say ‘there there, its going to be okay!”


In 2013 she began writing her debut book “101 tips for coping with ME“. She says she’s always loved writing and was inspired to write her first book when she realised there was a gap in the market for a simple, easy to understand, non medical jargon orientated book about how to live with ME. She has since written several others to continue to raise awareness, all with differing percentages of the proceeds from each book going towards Invest in ME Research, as well as setting up and running the Facebook page named after her first book. She now has an amazon author page, Hayley Green. She’s also a member of the Let’s do it for ME planning group. She confesses she can only do very little at a time though and has to pace very carefully indeed. Even visiting Facebook can exhaust her.

When I asked what her dreams/aspirations for the future were she replied;

“I dream of being able to move freely again without pain, to work full time hours, to be able to leave the house at the drop of a hat. To be able to dress, cook, eat and bath all in one day. I would love to set up a charity to provide tailored support to M.E sufferers. To pick up where I left off at 23 when I became so ill.”

Her new book “A piece of ME” is out now in paperback. It is an anthology of poetry written by ME sufferers. Priced at £3.75 with all proceeds going towards Invest in ME Research. Buy now!

Visit “101 tips for coping with ME” on Facebook 


Catherine’s Sponsored Haircut

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Catherine Milsom is raising funds for Invest in ME Research
and donating her hair to The Little Princess Trust – www.justgiving.com/fundraising/catherine-sponsoredhaircut
Catherine's hair cut

By Catherine Milsom –

Thanks for taking the time to visit my JustGiving page. I was diagnosed with Myalgic Encephalomyelitis (ME) in 2004 at the age of 19. A year later I became bedbound due to my symptoms becoming so severe and this situation continued for about 7 years. During this time I was unable to do anything for myself independently and had to rely heavily on my parents for care – even down to them feeding me liquidised meals. I was in too much pain and too fatigued to be able to eat solids or to feed myself. I lay in a darkened/silent room 24 hours a day, as light and noise made my many symptoms worse. Thankfully with rest, supplements and TLC from family, close friends and Carers my health has improved over the years. I am now housebound/bedbound and have a better quality of life although I still have a long way to go.

I really want to play my part in raising funds for research into this horrible illness, in the hope that one day they will find a cure so that others will not have to go through what we and many others have and still do endure.

So a while ago I decided to grow my hair and eventually be sponsored to have it cut and then donate it to The Little Princess Trust for them to use for a wig.

Yippee, my hair is finally long enough for me to achieve my goal! I will be able to donate about 14″.

With your help I would like to raise a £1,000 for Invest in ME Research.

Thank you very much for your support it means a great deal to me. Xx

Share Catherine’s story or donate at www.justgiving.com/fundraising/catherine-sponsoredhaircut

August Updates

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august updates banner

Phew! Another sizzling summer month on the international scene for supporters and colleagues of Invest in ME Research. As the charity quoted for Stacy Hart’s 4th August blog at Runnin On Empty…

“It is summer and it means holidays for most – but not for Invest in ME volunteers. Fundraising for our strategy of biomedical research projects continues with numerous schemes being set up to raise awareness and funds by a great team of supporters.

Since the June conference in London the charity has been busy getting the DVD of the event ready for delivery. The many hours of film footage need to be edited to a format that contains information in an accessible form, avoids unnecessary gaps, unplanned noises, comments or delays.

As ME is such an underfunded and under researched condition it is supporters of our charity that enable us to provide the latest education on research into ME – and build a strategy based on international collaboration in translational biomedical research – which looks for causes rather than simplistic psychological remedies that waste time and money – and lives.

Unfortunately, the NHS provides very little for ME patients and the services do not match the demand. Patients and carers rely on the internet and charities like ours to provide the information. Kjersti Krisner from Norway spoke at the pre- conference dinner about very severely ill ME patients and she said they are so grateful when someone cares about them. They live in hope and are so happy if they improve a little. Kjersti’s wonderful, positive pre-conference presentation is a must-see – and will open our IIMEC11 conference DVD.”

The IIMEC11 DVD containing the full presentations by leading biomedical researchers into this disease from around the world at the CPD-accredited 11th Invest in ME Conference held in London in June is available now and has already been distributed to 15 countries.

The conference followed the 2-day Invest in ME Biomedical Research Colloquium which brought researchers together from 13 countries to foster international collaboration in biomedical research into this disease. The conference report is available here. The keynote speech was given by Dr Vicky Whittemore of the NIH. The last research presentation of the day was given by Director of the Stanford Genome Technology Center at Stanford University, Ron Davis, whose son Whitney Dafoe has very severe ME/CFS. As promised, the IIMEC11 DVD also includes the very moving and thought-provoking presentation ‘Voice for the Voiceless’ by Kjersti Krisner, Norwegian advocate and mother of three children with severe ME. Order it here http://www.investinme.eu/IIMEC11.shtml#dvd

Severe ME Day
Severe ME Day is held on 8th August in honour of the birthday of the late Sophie Mirza, launched by The 25% M.E. Group in 2013 as a day to bring public awareness to those suffering from Severe and Very Severe Myalgic Encephalomyelitis and to remember all those no longer with us. The idea for this special day of understanding and remembrance was conceived by Diane, whose daughter Lili sadly died last year. Diane’s Story – Lili was published by Invest in ME in February 2013. 

The Let’s Do It for ME campaign was launched by people with severe ME, inspired by an article in the Eastern Daily Press in April 2011 on the progress of the proposal by Invest in ME to establish a Centre of Excellence for ME, featuring Kerry Newnham. Kerry has severe ME and was a text pal of Lynn Gilderdale, pictured at the top of our memorial poster with kind permission of Lynn’s mother, Kay Gilderdale. The names in the background of the poster are from the National CFIDS Foundation Memorial List.

Fundraising Updates
Jane Hurst raises funds for The 25% M.E. Group and Invest in ME Research through sales of the greetings cards she creates at home as a long term sufferer of severe ME. Jane’s Nature Photocards are available to buy online and her family also hold sales at local venues throughout the year. After a sale at O’Flynn’s Budgen’s Poringland store on 13th August, Christine Hurst (Jane’s mum) wrote, “We did really well and just about sold out. Everyone was full of praise for Jane’s lovely cards and we raised £186.20. Thank you O’Flynns Budgens for letting us sell the cards and their very generous customers.” O’Flynn’s Budgens tweeted, “Well done and thank you to all. We hope Christine will be in store again soon”. Our thanks and congratulations to the store on their 10th Anniversary this year!
Bill Clayton of The York ME Community set up a JustGiving page for Invest in ME in August. “Although I’m no longer able to work, I have short periods where I can concentrate on projects such as fund raising for Invest in ME who are doing such great work. The current project is with the aim of gaining more foot soldiers in the York area by bringing businesses on board by offering to advise their HR Teams about ME and through our inaugural Inter Company Fantasy Football League. Every penny of the funds raised from their registration fees will go to Invest in ME, and the hope is to to continue to raise funds in other ways too. Thanks to the York businesses who have supported us in supporting Invest in ME Research.”
Congratulations to Maria Houlihan on winning Lucy Macdonald’s Forgetmenot Quilt raffle drawn on 11th August. Lucy added, “Commiserations to those of you who didn’t win but may you have peace in the knowledge that the funds raised will be for the winning of a cure of this chronic dis-ease. Thanks again to all of you who took part.”
High five to Chris Turner for doing a skydive on 14th August, and thanks to his supporters raising £405 + £92.50 for Invest in ME!
On 15th August, Mike Harley was in Poland to run the 7th of his 28 EU Marathons. He wrote, “The finish was superb, amongst the best I’ve experienced, I ran over the line with my Invest In ME flag and got snapped a lot”.
Winner and runner up of Paul Kayes’ Rio Sweepstake generously donated their prize money to Mike’s JustGiving page. Thanks eveyone supporting Mike’s mega marathon challenge for Invest in ME.
Emily Norton correctly guessed the exact number of medals in Sophie Tennent’s Rio 16 Charity Sweepstake, which added at least an extra £50+ into Sophie’s JustGiving page in memory of those who have passed away from ME. She wrote, “It all adds up and I am entirely grateful for your support”.
Thanks everyone who organised and took part in the Charity Sweepstakes.
Big thanks to tenacious Team Rainbow Rabbits for doing The Colour Run Birmingham on 20th August for Invest in ME! Becky Hithersay wrote, “We did it!  Big huge thank you to all who sponsored us, you raised £257 (plus an extra £46.75 Gift Aid) for IiME (Invest in M.E). This is a fantastic amount and we’re really grateful to every one of you. Hopefully this also will reach those who didn’t leave names. Goodness me, I’m overwhelmed! Here’s a few pics, what a great day we all had, and the kids did a fantastic job”.
Inspired by a friend with ME “opening her eyes to this illness”, Penny Hooper announced her plans to raise awareness and funds for Invest in ME while going Round the World for ME and also nominating friends for a colourful challenge! You can find Penny’s page on Facebook, follow her on Twitter and read her story on JustGiving. Big thanks to Penny and everyone supporting her.
Stu Nimmo geared up for his runs for Invest in ME Research with specially designed T-shirts. He is doing this to support Karen Morris and donations go to her page on JustGiving. You can find Stu Nimmo runs for Invest in ME Research on Facebook, follow Karen Morris on Twitter, and support their fundraising efforts at Karen’s page on JustGiving.
Chloe Riches posted on 16th August, “I’ve gone blue! Now just waiting for 6th September before it all comes off 🙂 please share/donate to help this great cause 🙂 thankyou xxx”
Paul Kayes wrote that, so far he has earned £361.52 using TopCashBack all of which has been donated to Invest in ME Research and gift aid added so £450 in total. Would you be willing to sign up using our referral link? http://www.topcashback.co.uk/ref/paulk22
Lynne Allan continued to sell her delightful hand-crafted jewellery available on Etsy at ME2UDezignz with proceeds kindly donated to Invest in ME Research. You can find ME2UDezignz on Facebook, follow on Twitter, and keep an eye out for her Fiver Friday offers.
Thanks to Alison Orr, Invest in ME is one of 204 charities nominated by Phoenix traders which will receive a donation from The Phoenix International Charity ranging from £50 to £1,000, based on 70% of the funds raised through Christmas card sales in 2016. Alison added, “At least 20% of all sales through www.cards4investinme.co.uk goes to Invest in ME, so buy your Christmas cards from me and even more will be donated to Invest in ME! The Christmas brochure is online now. Have a look at the online flipbook version at the link. Delivery only £4. All profit to Invest in ME.” You can find Cards 4 Invest in ME on Facebook and follow on Twitter.
Research Updates
August Update on Invest in ME B-cell/Rituximab Research 

Invest in ME announced that they have agreed to fund an additional student at UCL to assist with the project “B cell function in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Investigations of metabolic function during B cell maturation and differentiation”. The aim is to investigate potential differences in B cell maturation, differentiation and metabolism between patients with ME/CFS and healthy controls.  The charity will underpin the extra work with a grant of £9000 to cover the student who will work until early 2017 assisting existing PhD student Fane Mensah and Dr Jo Cambridge. The team hope to identify whether potential differences are due to alterations in signalling or metabolism in B cells from ME/CFS patients and the additional student resource will hopefully accelerate Fane’s project.

Thanks to mulitiple generous acts from individuals and organisations (click here) and the amazing generosity from the Hendrie Foundation who have pledged a huge sum toward the rituximab trial and B-cell research, Invest in ME has managed at the time of this article, to raise £495,000 for the total research either performed, underway or coming to be performed. (click here to donate).

August Update on Invest in ME Gut Microbiome Research 

The total raised reached £175k of the £200k target and the charity posted –

Invest in ME continue to build their foundation of biomedical research at Norwich Research Park by maintaining their medical student sponsorship grant strategy for the third year running. The medical students they sponsor take part in the biomedical research projects the charity is funding which gives experience but also raises awareness amongst other medical students about myalgic encephalomyelitis. Their grants are for £5000 minimum.
They plan on continuing to maintain this key part of their research strategy. (click here to donate).

Upcoming in September

1st September: 1st of the month – the day to donate £1 to Invest in ME Research

4th September: Stu Nimmo runs Salford Quays 10k – www.justgiving.com/fundraising/isupportmeresearch

6th September: Chloe’s Head Shave for Invest in ME – www.justgiving.com/fundraising/Chloe-Riches1

12th September: Makayla Nunn will be 13 years old. She wrote,
“it will be 5 yrs in October that I have been ill, but this summer the hospital have said if I can manage and pace myself I can spend extra time with my horse Tommy. So because of this I want to challenge myself and Tommy to jump a 4ft jump… this will be a challenge as I’ve not been jumping for that long and Tommy has had a bit of a rest from jumping but I know we can do it and no better way to challenge myself than raise money for Invest in M.E at the same time. Please help me to help Invest in M.E because this illness can affect anyone at anytime and at any age no matter how fit or active they are M.E doesn’t care but I do I want answers. Thanks for taking the time to visit my JustGiving page.” www.justgiving.com/fundraising/Makayla-Nunn2

28th September: Deadline for voting for the JustGiving Charity of the Year award. You can vote once for any JustGiving charity, up until Wednesday 28th September 2016. Click here and type in IiME then click on their logo to complete the online voting form.

Wishing you all a super September – thanks so much for your support!