Research Presentation in Norwich

October 26, 2015 by Robin Sansom

Research into ME

A Presentation at Norwich Research Park

On the 23rd October 2015 ‘Invest in ME’ organised a presentation on ME research with a variety of speakers including Dr Mady Hornig, Dr Ian Gibson and Fane Mensah. This took place at the Norwich Research Park and Louise Prior from Elevate attended and has made the comments below as well as providing 3 recordings.

Louise Prior says,

“The warm up was a young man called Fane Mensah. He presented on Rituximab therapy related to b-cells. ‘ME patients have altered b-cell function or phenotype profile, related to b-cell depletion therapy’. [The drug] Rituximab seems to work with ME patients, but why not all patients? Probably related to the fact that there are a whole range of symptoms in people who are diagnosed with ME. Requires much more research!

Then Professor Mady Hornig, from the USA, spoke covering a vast array of items. She began mentioning the genetics & epigenetics, plus the environmental exposures aspect of developing an illness. She went on to the gut-immune-brain axis, pointing out that 98% of serotonin receptors are in the gastro intestinal tract. Normal gut microbiota modulates brain development and behaviour. Gene expression, which genes are turned on or off, and gene variance, can alter the immune response and whether persistent infection or not. So, RNA synthesis studies. She went on to autoantibodies but I need to listen to that again.

Then a large part was on Cytokines in ME. Ones involved in viral, bacteria and parasitic infections. No cytokines, no b-cells in individual.

Ampligene was talked about a few times. It’s not available in the UK. I think she said it’s only just available somewhere in mainland Europe. Circulatory cytokines, allergy related cytokines…

Then the mental fatigue subscale came up and it showed clearly that when there was an increase in a wide range of cytokines it helped short duration subjects. However long duration subjects were not helped. I think the point here was the subjects needed the help promptly, I believe the Professor mentioned the best would be in the first 6 months of diagnosis, but they set it as the first 3 years, because trying to get cooperation for a study wasn’t possible that soon. (Within first 6 months of being diagnosed people aren’t thinking of getting into a study!)

I know the Professor went on to mention diet, and particularly tryptophan, serotonin synthesis, circadian rhythm, sleep regulator…and something about cytokines-tryptophan-serotonin, but I’d have to listen to it again. She also spoke of probiotics, and which brought the serotonin back up again.

Louise Prior

Elevate to Sea Life Sanctuary, Hunstanton, Sept 26th

August 1, 2015 by Robin Sansom

TIME: We will aim to meet at the sanctuary at 2pm.

COST: We have a combination of £4 off vouchers and a few half-price vouchers which would make the cost for an adult £9.80 or £6.90. One carer per disabled person can get in free. If you cannot afford a ticket please contact us so that Elevate can pay.

https://www.visitsealife.com/hunstanton/

PARKING: There is a large pay and display next to the centre.

Elevate to Cromer – 27th June

May 20, 2015 by Robin Sansom

cromer

Elevate has organised events in mid, south, and west Norfolk, a Broads trip but so far nothing in the north where we have long-running members. We already have a good number hoping to come to this event if health and weather allows.

Cromer Event details:

Attractions: wheelchair accessible pier and promenade, and other seaside attractions.

UPDATE: some of us will be visiting the RNLI Henry Blogg Museum which is free but we’ve asked to give numbers for reserving a place to contact us if you’d definitely like to go. http://www.rnli.org/aboutus/historyandheritage/museums/Pages/Henry-Blogg-Museum.aspx

Arrive: when you like.

Meeting point and time: Entrance to the pier 2pm.

Disabled access: Elevate down to the promenade and up to the pier level in it’s lift!

Parking: 20 spaces on the promenade for blue badge holders. Non-disabled spaces nearby streets e.g. Cliff avenue. Or car park by the tourist information; or car park where the buses drop off.

Updates: It may be cancelled last minute if the weather forecast is terrible. You can contact the Elevate mobile number if you would like info 07538 801778

Extra events in the pipeline:

Hunstanton sealife centre at some point if we can get a special offer on ticket prices.
Possible bowling and indoor lightweight archery at some point although these are better for the cold months of the year.

Self-employed part-time with ME / CFS, Ann Starkie

May 19, 2015 by Robin Sansom

Part-time self-employed work with ME

Ann

A story by Ann Starkie of AS CAREERS

Introduction:
Ann is an award winning careers advisor and author. She also has ME and has been connected with Elevate for quite some time. She has written a little bit about her experience of being self-employed, on a part-time basis, and how she has setup up her own company despite many struggles and challenges which she describes with disarming honesty. It is truly inspiring and encouraging to see what she has been able to acheive despite it all. She shares some helpful insights into how she paces herself and manages her time and energy.

I guess my story started in November 2005 when I had flu quite badly and it just didn’t go away. Initially I thought I would be off a couple of weeks from my full-time job working as a careers adviser in Connexions Norfolk. However, weeks turned into months with no real diagnosis with what was wrong.

I went from working full-time to not being able to walk to the bathroom, suffering terrible fatigue and pain in all my body, strange feelings in my head that felt like it was stuffed with cotton wool. I wasn’t able to take my daughter to school who was 5 at the time and that was an all time low when I had to get my mother at the time to come over from Cromer and friends to help me take her to school and fetch her.

After countless trips to the doctor I was eventually diagnosed with ME after visiting a Neurologist privately and then being referred to an ME specialist. I picked up two vital things by March 2006 – I wasn’t going to be able to go back to work, and no-one knew how to make me better. In April 2006 I resigned from my job and although I had made a little progress and could now walk very short distances I was nothing like the person I had been. It was all very depressing. I never signed on as I couldn’t face it, but I had an earning husband so we could manage.

For some time whilst working at Connexions before I got ill I had liked the idea of going self-employed because of the work life balance. However, getting ME thrust me into this as the only way I was going to work and get money as I was very reluctant to go on benefits.

I believed very naively at the time I was going to get better soon, so I didn’t want too much of a career gap! I started working on my website initially from bed as someone had told me I had to be clear with myself about what I was going to sell, and my pricing. He said setting up a website would help me clarify my market and what I was selling. I did this with a programmer who came to my house and I have had more than one meeting by my bed side!
I followed a guide given to me from NWES and at the time Business Link on setting up a small business which was very helpful. I chose the name AS CAREERS because it meant I could be individual, it had “careers” in the title so that meant it was obvious what I did, and I could start trading.
My first trading day I never forgot was September 1st 2006 and I had a call! The whole cost of the business was £1000.00 from savings including computer, printer, website the lot. I had put an advert in the local church magazine and the website was launched but I didn’t expect anyone to really ring.

To begin with I was bad at pricing. I priced my time too low so ended up working for next to nothing. I didn’t calculate in the non-client contact time, time I would spend typing up reports or doing work like administration for clients. I also didn’t factor in other expenses very well like website costs, paper, ink, although there wasn’t much travel costs in the first year!

Despite the business literally seeing three people in the first month I felt proud I was getting out of bed albeit down the my office in a back bedroom and doing something. The pain was very bad and there were many days I couldn’t work at all, just recovering from seeing a client. Conversations were very exhausting to begin with. More than once I shut the door from seeing a client and collapsed on the sofa too exhausted to get upstairs.

About a year on in the March of 2007 I began to feel more confident and changed my website, cut costs, changed my pricing and felt more confident about what to offer, what sold and how to soft well down the telephone which suited me better. I was beginning to recover a bit as well as the brain fog started to go, but I still couldn’t walk far. I began to plan how many hours I could do a week and to try to book in clients with rest periods before and after. Literally, initially this meant one client maximum over two days.

I began to be able to do a little more but still had no way of doing much more because as soon as I did more I relapsed and spent ages in bed. My OT at the time got very angry as I seemed incapable of sticking to a pacing routine, so frequently was crying down the phone to her because I had overdone it.

I got into seeing clients at home and then started to take on work from another consultant who had won a National Careers Service contract at the time and offered me odd clients. Initially this was at home but later on I was well enough to go out to employer’s premises and to other venues. This work was a lot more demanding and I lived off pain killers.

I didn’t tell the consultants that I had ME initially and I had to be very strict how many days I could offer so only worked a few a week at this point with days off in between. At times I had to work three days in a row it was a nightmare. I have had to lie down in my car at lunch time!

In 2009 I was offered the chance to write a careers book for Trotman. The deadline was very tight – they wanted it in 3 months start to finish. I stopped client work at this time and did much of the work from bed or in the library where I would research and lie on the comfy chairs.

I scheduled out the book building in rest days which meant I had to be very smart about how I wrote it as I actually had less time than a normal author. More than once my commission editor rang me and I was in bed – I didn’t say I had ME but said I was feeling under the weather with a virus…..this was a time when I felt I couldn’t tell a publisher I had ME. This was bad and I wouldn’t advise this in my work, and don’t do this now but I wasn’t confident that they would let me do it otherwise. I completed the book on time.
This work increased and by 2010 I was managing a much larger contract with a different manager who knew about my ME seeing up to 5 clients a day for about three days a week. This I did from an office in town. I did this up until October 2014 and although the money was good, I wasn’t sorry to stop when it went to another contractor. It had really taken its toll.

I was in a lot of pain and taking Tramadol four times daily and I had very little energy to do things with my daughter who is also sick not from ME but from an immune system complications which means lots of hospital trips and extra problems like her not sleeping well. I had no social life as I didn’t have the energy – I had tried joining a choir and given it up. I also couldn’t fit in any exercise at all which I saw as important to making my stamina better.

I made a conscious decision not to take on external work again. Funnily it was not so much the work but the travelling to and from the office was a major exhaustion. Not only the driving but walking to my office up a short hill was really a big problem.

I have been offered the chance of working in schools recently but turned it down because I want to have a life alongside working, and I just can’t have both if I don’t pace and work from home. I now aim to see three private clients a week giving me enough to get by and spend more time and make more money from existing clients rather than looking for new ones.

I still don’t make a fortune, as I only work part-time but I am at a point now where I can earn enough to get by and although I often crash and curse I do have some times I can take my daughter out now. She has been very poorly this year and in hospital so this has also set me back physically.

Going self-employed was the best decision I have ever made in my career. It has enabled me to salvage a career that would otherwise have been destroyed. I have kept my professional memberships and made some achievements along the way to become a national award winner and an author – not that I being boastful!!
However, I am not cured and every day I have pain and struggle with pacing work commitments, with social and family needs. Despite this ME has given some amazing positives. I would never have been the mother to my daughter I am now without it. I am far more patient, kind and loving to her and she really needs that as she is also ill. We laugh together about how terrible we both feel sometimes, and how lucky we are to not even have to explain to each other. We just know.
I have friends who really are friends now, and I now don’t have anyone who isn’t in it for the true me as the other friends have long gone. I have all the friendship of my Facebook friends on Elevate who are wonderful and have met people that otherwise I would never have known. Without ME I would not have given up work and made the push for self-employment and written a book and been lucky enough to do a job I love, as I no longer have to answer to someone else. I have been able to spend time with my mother who is now much older and disabled and this would have been time lost. Most of all I feel that working self-employed has given me a sense of purpose – I know what I want to do and am living it. Without ME I am not sure I would have achieved that.

Ann Starkie

AS CAREERS

Creative Fundraising

May 14, 2015 by Robin Sansom

Raising money for ME/CFS Research

Why?

Because ME/CFS is one of the most under-funded illnesses. This is due to only partial recognition. There may be a lot of biomedical research findings which provide strong evidence that the illness is a real and primarily organic illness but these are small projects which don’t tend to make it into the big medical journals. Therefore there is still a lot of ignorance both in the medical community and in society at large which doesn’t help to encourage funding.

There are organisations and charities successfully using crowdfunding for research projects in the absense of goverment funding. Two good examples are ME Research UK and Invest in ME.

Some people with ME/CFS are well enough to do craftwork which is sellable. A few individuals within Elevate have sold a few things for charitable causes and it’s something we like to encourage. Please contact us to find out more.