It is difficult to believe it’s now ten years since I private messaged ‘Ricardo’ on Foggy friends, the M.E chat room site, offering to support the newly established ‘Let’s do it for M.E’ campaign. The campaign was aimed at mobilising M.E patients to raise funds for biomedical research into M.E, with the long term objective of establishing a Centre of Excellence for ME in Norwich research park. This Centre of excellence, if it was created, would facilitate clinical examination of patients, translational biomedical research and education for medical professionals. The initial fundraising target was £100,000.
The exotic sounding ‘Ricardo’, who turned out to be our very english teddy Paul ‘bear’ Kayes, invited me to join the Let’s do it for M.E planning group on Facebook. It is extraordinary to reflect on how much I’ve done, experienced and gained since then. I’ve crocheted wristbands, set up a recycle for charity scheme, held a 21st birthday fundraiser, numerous competitions and sponsored events, done a stint as a Let’s do it for M.E blog author, been on television, even met my soul sister!
With the support of Let’s do it for M.E, Invest in M.E Research has gone from strength to strength. We succeeded in raising the initial £100,000. This was used to fund the first PHD student to kickstart the gut microbiota research project. Since then, Invest in M.E has continued to undertake research projects into the gut as well as into B-cells. IiMER now has five PHDs under its belt. The foundations needed for the Centre of Excellence have been laid. Hopefully this will soon become a full reality.
You may be wondering why so much research into the gut? The simple answer is that the gut is the gateway to the immune system. The gut plays a major role in the functioning of the immune system. This is a fact that has only recently been discovered and even the basics are still yet to be fully understood. One of the reasons the gut plays such an important role in the immune system is because it contains a huge variety of different species of bacteria and viruses. Some of these bacteria are ‘friendly’ bacteria which helps you digest your food. Others are not so friendly. All influence your general health and ability to fight off disease. One of the seemingly common triggers of M.E is an initial infection or virus from which the patient doesn’t recover. It’s possible that changes in the gut microbiota could contribute towards patient’s inability to recover. Such changes to the gut microbiota could also cause local and systemic inflammation. This could explain the inflammation of the brain and spinal cord that has been found in the post-mortems of M.E patients.
Based on their ongoing research into the gut, IiMER are now proposing a clinical study of the effectiveness of feacal (poo) microbiota transplants as a potential treatment for M.E. Feacal microbiota transplants literally involve replacing the existing microbes in your gut with someone else’s friendly ones. This is of particular interest to me. A feacal microbiota transplant has been recommended to me as a therapy by both my specialist consultant and my best M.E friend. My M.E was initially triggered by a virus whose symptoms were very high temperature, nausea and vomiting (including on water). Although it’s never been discovered exactly what virus this was, the symptoms suggest it was a type of viral gastroenteritis (gut virus). Unfortunately I’m not able to take part in the clinical trial as you have to have been diagnosed for less than fifteen years in order to participate and I’ve been diagnosed for 21 years. However I’m hopeful about what the outcome could be. I appreciate that having someone else’s poo syringed down your nose isn’t the most appealing of treatments. However a recent study performed in a single centre in Australia has reported significant clinical improvement in over 70% of it’s M.E patients.
Recently IiMER pledged a further £650,000 towards M.E research which would include the cost to cover this major treatment trial. Some of the money for this pledge will almost certainly need to come from ordinary people crowdfunding. Since Let’s do it for M.E’s inception ten years ago, it’s become a movement with many schemes and people participating. We’re always keen to welcome new supporters however. From raising funds for free whilst shopping online to doing a sponsored marathon and everything in between, there’s something for everyone to get involved with. Check out https://ldifme.org/ for more information.
On a personal note, I’m fortunate to be able to say that my health has improved since my 21st birthday fundraiser. I’m now living in my own home with Madame Pickle (my cat) for company and can eat proper food, rather than being tube-fed. I am able to use a wheelchair, have completed a Open University access module and am just starting a level one module this autumn. Having said all this, my life is still far from being like that of a healthy twenty-nine year old. I hope I will continue to recover but, having already experienced severe relapses, it’s a fear that’s always there.
Because of this, once again I’m asking for donations for my 30th birthday, as I did my 21st. The greatest gift I could ever be given would be to live a healthy life again, unhampered by fear of relapse. IiMER is the best chance I’ve got of receiving such a gift. Plus, it’s also the 10th anniversary of the founding Let’s do it for M.E, which is something that definitely needs celebrating! So please join me in offering a toast, pulling party poppers and, if your finances allow you, giving a donation to continue supporting this vital work.
Let’s do it!