Decode M.E.

The Decode M.E. study is the world’s largest study into M.E. 25,000 DNA samples are being taken from people with M.E./CFS from around the UK with even more data from people being collected through questionnaires. The study has been expanded to now also include up to 5,000 DNA samples taken from those who have developed M.E./CFS after contracting the COVID-19 infection.

The Decode M.E. study is being led by Professor Chris Ponting who is part of the Medical Research Council, Human Genetics Unit based at the University of Edinburgh.

The aim of this research project is to find out if there are any genetic causes as to why people develop and become unwell with M.E. - Myalgic Encephalomyelitis also known as CFS - Chronic Fatigue Syndrome.

Funding has been secured for this largest ever study into M.E./CFS to see whether M.E. is partly genetic in nature and, if so, this will help researchers pinpoint what causes this illness. The study will also hopefully help scientists better understand M.E./CFS and ultimately help find treatments for the disease.

There is still time to participate in this study. The closing date for participation closes at 5pm on the 15th November. Click here to participate.

To find out more go to the Decode M.E. website and also check out their FAQ’s.

In time I look forward to the results of this study and seeing what comes of it. Questions such as did I have a genetic predisposition to developing M.E. and if so what triggered the genetic response to me getting M.E.? Also if M.E. is genetic where did it come from as no one in my family as far as I’m aware has M.E./CFS. I also hope that the research helps to develop some effective and targeted treatments specifically for those with M.E./CFS and the research with also help healthcare professionals better understand M.E. and it will generate in time better access to treatment and care as currently it’s a bit of a postcode lottery. I’ll also be interested to see if the researchers come up with correlations to other illnesses some people like myself develop.

Winter worries

As the weather is slowly getting colder there’s a big worry on my mind. I’m new to living alone and this will be my first winter paying bills. Many people are struggling with the cost of living in different ways, single parents, those on a low income, job seekers and those with disabilities.

The charity Scope in recent 2023 finding found that “On average, disabled households (with at least one disabled adult or child) need an additional £975 a month to have the same standard of living as non-disabled households.” - Scope, Disability Price Tag 2023

Disabled people incur many extra costs, varying from person to person but many disabled people find that come the colder months they incur extra costs to stay warm because of their health.

For me the cold makes my symptoms worse. My joints are more painful, my muscles go into spasm more and just generally my pain levels increase and I feel a sense of malaise. It’s also important to have a warm home because I have autonomic issues so my body struggles to regulate its own temperature, in the summer I can’t cool down so well and in winter I can’t warm myself up so well. Obviously I dress warm in the colder months, I get my carers/PAs to make me hot water bottles and I microwave my warmies as well as snuggling under my heated blanket and taking other measures to stay warm that cost less. I’m so grateful for the cost of living payments as they will help a lot hopefully if/when I get them to put them on my gas and electric meter especially on my gas meter to heat my home. It also helps that this is a new build bungalow so it’s built to be warmer and more energy efficient.

It’s still a worry though over affording the heating bills over the next few months on top of all my other expenses and additional disability expenses. I know I’m not alone in my worries over the cost of living and also the additional disability price tag burden. It doesn’t leave much room to put money aside to save up.

My main worry is falling into debt over heating my home when I know that medically I need to have a warm home to stay well. I also worry about what will happen when the Cost of Living payment runs out and having to budget to put money on my meters.

At the moment I’m managing but it’s only going to get colder from now on, I just hope I’ll be okay.