Monday, 24 June 2019

The Loneliness of the M.E. Monster

June 20, 2019

by Jessica Taylor-Bearman (author of “A Girl Behind Dark Glasses” - click here).

It is National Loneliness Week and I want to talk about how loneliness has affected me within my M.E. journey. When I first became chronically unwell, my life changed dramatically. I had been a very sociable 14-year-old, who enjoyed school and being with my friends. The truth was, I didn’t have that energy to spare anymore. At the beginning, I didn’t have the mental or physical energy to spare to socialise and it was something that I missed greatly.

After a few months, my friends would see me less because they didn’t know when I was well enough for a visit, and I happened to live in a little village away from the school, so I missed out. It is amazing how a house can be full of people (I was in a family of five), yet still feel like you are totally alone. No one could really understand what I was going through, and this just added to the frustration and loneliness that I felt being so ill.

I moved to hospital at the end of 2006, and that was insufferable. My family stayed with me at first and became my advocates, and social stimulation. However, after a few months, they were not allowed to come to the hospital for more than ten minutes a day. This was when my loneliness hit its lowest. I craved communication, but the nurses didn’t really have the time to try and work out what I was trying to say and didn’t know how to listen to me. My family were chaperoned when they were with me, so I didn’t get to spend any quality time with them. My mood dropped. I stayed positive because I had to keep telling myself that it would get better, but I started to dream the day repeatedly. I didn’t know when I was in reality and when I was dreaming. It was miserable.

This was before the days of social media. We had a little bit in the form of MSN Messenger but there was no Facebook, Instagram or twitter to connect to more people suffering with M.E. or any other chronic health disease. I didn’t know any other people suffering from ill health, let alone chronic health. It was a completely new to me. Social media can be both a blessing and a curse. I would have loved it to be around at the beginning because I don’t think I would have felt quite as alone but also to see what all my friends were up to would have been quite upsetting because I couldn’t join in.

In the time that I was completely missing, I felt like my friends and family didn’t really know how to deal with me. I was unable to communicate and this was problematic. I watched as they all grew up, and I didn’t join them. It was incredibly hard to watch the changes and not be able to do anything about it. The world of one room became my safe haven. I knew what was going on in that room, it had become my whole world. I didn’t see anything outside these four walls. How could it be so lonely inside it?

When I started to re enter the big wide world and started to be able to see my friends a bit more, it made me realise quite how much I had missed. I had lost out on so much and it was incredibly painful. Friends were now at university, I hadn’t even got passed my GCSES at school. I was stuck in a time warp. I challenge anyone to not feel lonely when you realise what is lost or you can’t find your tribe of people who get you. This is where all the social media outlets became incredibly useful to explain my life to someone else. I felt like I could connect with people for as little or as long as I was able to. I started to learn what my identity was. For years, I think that the M.E. Monster was my identity. It had taken over every aspect of my life, I had nothing else. I have started to improve further, I think I struggle more to know who I can connect with. People don’t expect me to still be suffering from loneliness but it is still there, just in different aspects of my life. Connecting with other people who suffer from this is very helpful, but it doesn’t really solve the problem. If I could say one thing to a person who doesn’t suffer with ill health, it would be: don’t forget those who go a little quiet on you.

They are probably struggling in more ways than one and need people to rally around them.

Be kind.

Thursday, 20 June 2019

The 14th Invest in ME Research International ME Conference 2019

From the European Federation of Neurological Associations (EFNA) website – 

The 14th Invest in ME Research International ME Conference 2019 – IIMEC14 – took place on 31st May 2019 in London and attracted delegates from twenty different countries – from Europe, North America and Australasia.

The conference day was preceded by the 9th Invest in ME Research International Biomedical Research into ME Colloquium – a two day closed researchers’ meeting with almost 100 eminent researchers invited to attend from fourteen countries – and the full day Thinking the Future – Young/ECR Conference for young and early career investigators.

These three days prior to the IIMEC14 conference brought together researchers (both new to ME and experienced ME researchers) to collaborate and share knowledge for the benefit of future research into this disease by enhancing education and effectiveness of research efforts. The need for funding of biomedical research was underlined as the theme of ME Conference Week 2019 – #InvestinMEresearch

The IIMEC14 conference showed the major initiatives and research taking place, continuing an international collaborative strategy for biomedical research which Invest in ME Research has been championing for over fourteen years.

EFNA’s Executive Director, Donna Walsh, and Communication Manager, Elizabeth Cunningham, attended the conference – sharing news of EFNA’s advocacy work at European-level and on-going engagement with member organisation the European ME Alliance (EMEA).

Nancy Van Hoylandt, EFNA Board Member and EMEA representative, brought the #BrainLifeGoals campaign to the conference. Participants were delighted to share their #BrainLifeGoals and raise awareness of the issues facing the ME community.

Friday, 7 June 2019

The Safest Place

C H Spurgeon's Cheque Book Of The Bank Of Faith Daily Devotional for 7th June

“And I give unto them eternal life; and they shall never perish, neither shall any man pluck them out of my hand.” 

John 10:28

We believe in the eternal security of the saints. First, because they are Christ's, and He will never lose the sheep which He has bought with His blood and received of His Father.

Next, because He gives them eternal life, and if it be eternal, well then, it is eternal, and there can be no end to hell, and heaven, and God. If spiritual life can die out, it is manifestly not eternal life, and that effectually shuts out the possibility of an end.

Observe, further, that the Lord expressly says, "They shall never perish." As long as words have a meaning, this secures believers from perishing. The most obstinate unbelief cannot force this meaning out of this sentence.

Then, to make the matter complete, He declares that His people are in His hand, and He defies all their enemies to pluck them out of it. Surely it is a thing impossible even for the fiend of hell. We must be safe in the grasp of an almighty Saviour. Be it ours to dismiss carnal fear as well as carnal confidence and rest peacefully in the hollow of the Redeemer's hand.

Saturday, 1 June 2019

Out of sight… Recent work looking at how to involve severely ill ME/CFS patients in research

(Taken from the Spring edition of “Breakthrough” magazine produced by ME Research UK.)

There is a considerable lack of information about those people with ME/CFS who are severely ill. They are often neglected—even though they have worse prospects of recovery—and under-represented in what little research is done.

A large part of the problem is that their challenging circumstances mean these individuals have difficulty accessing medical care and engaging in medical research. Is there any way of improving this situation?

With funding from ME Research UK, Victoria Strassheim and colleagues at Newcastle University have been conducting a programme of research concentrating on severely affected ME/CFS patients. Over the last couple of years, Victoria has published a review of existing research on severe ME, and an exploration of the effects of deconditioning in these patients. A third paper was recently published in BMJ Open, and looks specifically at how to include severely affected ME/CFS patients in research.

The first part of the project was to attempt to contact and evaluate patients with severe ME/CFS within the Northern England Clinical Network. The participants were adults with ME/CFS who were wheelchair-, house-, or bed-bound. A total of 483 questionnaire packs—including the Barthel Functional Outcome Measure and the De Paul fatigue questionnaire—were sent out to those people identified.

Unfortunately, only 63 packs were returned, although 76% to 88% of participants managed to complete the questionnaires successfully. The responses provided a host of information on the burden of symptoms and functional difficulties patients have to live with. The findings of the survey are freely available to download from the BMJ Open website:

The second part of the project involved making a series of home visits to five severely ill ME/CFS patients, and attempting to complete assessments previously conducted in people with mild or moderate ME/CFS.

Over the course of four visits, a number of activities were attempted, including various physical and respiratory tests, cognitive assessments, and several questionnaires. Two patients were able to complete all of the assessments, while the other three achieved around 50%, and were unable or refused to perform the other tests, or could not attend due to ill health.

The investigators conclude that people severely affected by ME/CFS can engage with research, but they have a considerable burden of symptoms and a poor quality of life, and they need more support during the research process. The use of “research advocates” is suggested, to help engage and recruit these individuals into clinical studies.