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£520k target hit for IiME Research Rituximab Fund!

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You did it for ME! Let’s keep doing it! We supporters at Let’s Do It for ME would like to thank each and every individual, family, group, team, organisation or company contributing to this vital research and supporting by whatever means.

We would of course, also like to thank the forward-thinking and incredibly hard-working Trustees and Scientific Advisory Board of Invest in ME Research and all the other volunteers and researchers working with them to establish diagnostic tests and medical treatment options for some 250,000 people with ME in UK and millions around the world.

Please click here to read the full update by Invest in ME Research, where you will also find info and links to the charity’s various other projects related to developing a UK Centre of Excellence for ME needing further funding, such as the Gut Microbiota Research, education for medical students and the charity’s international biomedical research conference events: http://www.investinme.org/ce-news-1708-01.shtml

We have reposted an extract below.

Well done everybody and thank you for your support!

Invest in ME Research has now reached the target set for the B-cell/rituximab fund.

This is another major target reached and is a wonderful achievement by dedicated supporters and friends across the world. The total of funds raised or pledged for B-cell/rituximab projects is £520,000.

From this the charity has already funded research at UCL, including a PhD student, and allowed strong collaboration to be formed with the researchers at Haukeland University Hospital in Bergen, Norway.

The initial preliminary B-cell study at UCL looked for likely responders and also introduced the UCL team to research into ME [1], leading to a UK rituximab trial.

This early work also created the foundations of close collaboration between the UK team and the Norwegian researchers at Haukeland University Hospital in Bergen.

This working collaboration and the work performed at UCL was credited as enormously valuable to the Norwegian rituimab trial work by one of the specialists there.

Once it became clear that a reorganisation at UCL would mean the UK trial could not take place there, and once it was decided that the trial could proceed at Norwich Research Park, then further collaboration was made and the Norwegian team visited Norwich in force in January 2017 to discuss with the UK team – UEA, IFR (now Quadram Institute Biosciences) and UCL – at the Centre there – click here.

As we now make preparations for the next phase, a new visit to Norwich is planned for when the Norwegian team break the codes for their Phase III trial later in 2017.

From the £520,000 raised Fane Mensah was also funded with a PhD grant to continue the B-cell research which is so important. This work was described here (click here).

Recently this work has been expanded thanks to a grant from Solve ME/CFS in USA which allowed Fane and Chris Armstrong to collaborate (click here).

Chris and Fane met when both were invited by IiMER to the sixth Biomedical Research into ME Colloquium (BRMEC6) in London in 2016. Dr Zaher Nahle from Solve was there also, and so another collaboration ensued. The work funded by IiMER has produced this paper from Fane and collaborators – Chronic fatigue syndrome and the immune system: Where are we now? [2]

Our initial target of £350,000 which was set with our advisor some years ago was reached and allowed the additional B-cell research to take place.

A position for a Senior Research Assistant to help with the UK trial is being advertised.

Our plans are to continue to raise funds for the UK Centre of Excellence for ME where international collaboration is a key concept.

We are pleased that Professor Ian Charles of Quadram Institute discussed the possibilities with the Centre in his keynote speech at the recent IIMEC12 International ME Conference in London (DVD available here). Professor Charles stated that he hoped “…they were being ambitious enough” for the Centre.

Our thanks to the wonderful supporters who are making it possible to apply high-quality science to looking for the cause(s) of this disease.

Our dedicated microsite for the UK rituximab trial and B-cell research has more details.

We are working on updating that site shortly and will include it in the Centre of Excellence microsite.

We will also be introducing a blog section which will allow the IiMER-funded researcher to interact more.

We hope to begin that soon – more details here.

Our mascot, Professor Let’s Do It for ME, was created by our supporters and indicates the B-cell/rituximab total – posters by LDIFME’s Jan Laverick.

Please help us by supporting our campaign for the
UK Centre of Excellence for ME.

Ways to help us are shown in the column at the right of our page.

References

1.
http://onlinelibrary.wiley.com/doi/10.1111/cei.12749/pdf
2. https://www.researchgate.net/publication/316080804_Chronic_fatigue_syndrome_and_the_immune_system_Where_are_we_now
3.
http://investinme.org/ce-news-1702-01.shtml

Read more here: http://www.investinme.org/ce-news-1708-01.shtml

Run the Royal Parks Half Marathon 2017 for Invest in ME Research!

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Places left to run the Royal Parks Half Marathon for Invest in ME Research in London on 8th October 2017. Deadline for registration is 5pm Friday 18th August, so please ask any well friends or family members who may be willing to run for research for ME (Myalgic Encephalomyelitis) to contact the charity asap:
click here for details.

This Royal Parks Half Marathon route winds through four of London’s eight Royal Parks (Hyde Park, Kensington Gardens, St James’s Park and The Green Park) in all their autumnal splendour, taking in the capital’s world-famous landmarks on closed roads. There are 16000 runners. The course is 13.1 miles (21 km) long.

This will be a great opportunity for Invest in ME Research to raise awareness of its strategy of funding high-quality biomedical research and the development of a UK/European Centre of Excellence for ME – and to raise awareness of the need for biomedical research into this disease. The charity wrote:

We would love to have you on the team for this year’ s Royal Parks Foundation Half Marathon.

We only ask that you pledge to raise a minimum sponsorship of £150 (excluding gift aid)- there is no registration fee as the charity is covering that cost.

To apply, simply contact us with title ‘Royal Parks Half Marathon’ and complete our online application form.

If you have been successful in securing a place in the public ballot, we’d love to have you on our team – simply simply contact us with title ‘Royal Parks Half Marathon – Own Place’ . There’s no minimum sponsorship, just raise as much as you can!

Please click here for full details, contact, terms and conditions: http://www.investinme.org/IIMER-Newslet-17-07-03.shtml

Thank you for your support!

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