Category Archives: Information

ME/CFS review event Kirkland hospital

Hi Everyone, 

On Monday Laura and Lynsey  were at the meeting for ME/CFS NHS Review representing Sam and ME, below is a report that contains information given at the meeting. 

We would just like to say getting a bunch of people including a GP representative, ME/CFS sufferers, and Lanarkshire NHS together was a step forward for sufferers. We are getting noticed and acceptance of this debilitating illness is a step in the right direction. We look forward to seeing the report for changes that are needed to help us.

 

 

ME/CFS review event Kirkland hospital medical education training centre fallside road Bothwell

The purpose of this meeting was to work with the ME/CFS NHS commitment, The role of the GP, the patients experience and to work in groups to capture the current care provisions available to Lanarkshire patients seek to understand and improve where possible.

We heard from Kenny Small NHS director of human resources, interim lead south Lanarkshire community health partnership

He covered

Ageing population, increasing incidences of long term conditions, public health challenges owing to lifestyle choices, workforce pressures, and constrained resources

He outlined their commitment to ME/CFS suffers as follows

  • To circulate the Good Practice Statement to all GP’s and relevant specialist services in Lanarkshire
  • To review the current support available to people diagnosed with ME/CFS
  • To map these against the Scottish good practice statement 2010
  • Consider any gaps and shortfalls in services
  • Work with key stakeholders and informants consider what improvements we can make to how we currently support patients.

The NHS quality Strategy 3 quality ambitions

  • Person – centred – Mutually beneficial partnership between patients, their families, and those delivering healthcare services. Partnerships which respect individual needs and values and which demonstrate compassion, continuity, clear communication and shared decision- making.
  • Safe – NO avoidable injury or harm from the healthcare they receive, and that they are cared for in an appropriate, clean, and safe environment at all times.
  • Effective – The most appropriate treatments, interventions, support, and services will be provided at the right time to everyone who will benefit, with no wasteful or harmful variation.

 

DR Chris Mackintosh Associate medical director south Lanarkshire community health partnership/GP lead for neurology.

He told us of what is going on in NHS Lanarkshire

Prevalence

  • Estimate of at least 0.2-0.4%
  • Anyone, Woman aged from 35-55 years NHS Lanarkshire 1000-25000
  • The Who; Myalgic Encephalomyelitis (ME) including post viral fatigue syndrome (neurological diseases) ICD 10 G93.3 (code)

It is helpful to create a list of all current symptoms as ‘ Polysymptomatology’ is a significant diagnostic clue.

GP Role

  • Exclude: other possible causes of fatigue
  • Enquire: about travel, tick/insect bites, unusual infections, drug and alcohol use
  • Review: Current prescribed medication
  • Height & Wieght (obesity, glandular disorders)
  • Standing and lying blood pressure (Addison’s disease)
  • General medical and neurological examination

Possible interventions

  • Medication – from GP
  • Medication – Following advice
  • Cognitive Behavioural Therapy
  • Graded exercise therapy
  • Relationship with GP practice

What’s going on in NHS Lanarkshire?

Referral

  • For assistance with management where there is diagnostic doubt
  • Pathway to diagnoses
  • Will need to be modified appropriately by NHS boards, to take account of local services development and provisions.

Tony Fitzpatrick change and innovation manager interviewed 8 ME/CFS sufferers to find out the following:

  • When they first became ill
  • How they were investigated and diagnosed
  • Who made the diagnosis
  • What support has been available to them
  • What helps and what doesn’t

Our aim was to:

  • Listen to patients from across Lanarkshire
  • Learn from their experiences
  • Share learning
  • Compare their experiences against the Scottish good practice statement on me/cfc (nov 2012)

Process

  • We asked GPs (Lanarkshire ME support Group) to identify patients willing to be interviewed
  • We made appointments to meet patients in their homes
  • We wrote down their stories
  • We asked them to check that we got it right

The interviews

North Lanarkshire

  • Viewpark
  • Coatbridge
  • Wishaw
  • Bellshill
  • Motherwell

South Lanarkshire

  • Carluke
  • Uddingston

What we learned

Each patient’s experiences are unique – there are similarities and differences.

ME/CFS has a major negative impact on quality of life – the condition affects daily activity, employment, relationships, self esteem…….and more.

But we didn’t learn anything about diagnostic practices since the good practice statement was issued in 2010

We also learned

Some people do not agree with the Scottish good practice statement on ME/CFS (Nov 2010)

  • Having a supportive GP makes a difference
  • Patients become experts
  • Patients progress to self management
  • Patients access complementary and alternative medicines.
  • Good practice statement on ME/CFS (Nov 2010)
  • To what extent do these experiences reflect good practice What are the gaps and shortfalls
  • What improvements can we make to how we currently support patients
  • We all split up into groups to discuss the good practice and experiences with NHS
  • What currently exists
  • What works well
  • What doesn’t work well
  • What does not exist/is not available to people in Lanarkshire (possibly provided as a tertiary service in NHS greater Glasgow & Clyde)

What improvements can we propose to how we currently support patients

Headlines form group feed back

  • GP awareness is essential
  • Clinic for sufferers
  • Early diagnosis
  • Advertisement

 

The information gathered today and writes up a report of the workshop to reflect our current provisions any gaps and improvement proposals

Present the report to NHS Lanarkshire modernisation board.

 

“Try Everything Once…Except That”

As today is M.E Awareness Day one of the Sam and M.E committee members, Lynsey Murray, takes a look back at every lotion, potion and treatment she has tried over the last 4 years of living with M.E.

Over the last 4 years I have become a Guinea Pig for the Sam and M.E support group. Willing to try everything and anything (well apart from that, God no one wants to do that) in the hope that one day I will be cured and be able to live a healthy life again. Today I have decided to reflect on my experiences.

As advised by medical professionals:


1. GET- Graded Exercise Therapy.  

Helpful?  Pfft No not particularly. Most exercise exasperates condition. Could be helpful though if going back to basics like learning to use legs again for example. But not so helpful during a flare up. 

tumblr_mbw70gQJ2Z1rar4w9o1_500

http://www.celebquote.com/2464

2.CBT- Cognitive Behavioural Therapy.  

Initially I thought, “I do not have a behavioural issue”, however as ever I was willing to give it a go. Mainly focused on pacing techniques and management of symptoms. Helpful? In some ways but only regarding how to deal with having M.E not how to control or alleviate symptoms. This is not a treatment or a cure for M.E and should not be billed as one. It helped me accept my condition that is all.

http://www.drheckle.net/2012/10/wine-is-cheaper-than-therapy.html

 http://www.drheckle.net/2012/10/wine-is-cheaper-than-therapy.html

3. Pain Management-Standard Pain Medication.

Can be helpful-although some days not so much.

i-think-this-what-pain-feels-like

http://quizzicalllama.wordpress.com/2013/09/12/

 

4. Citalopram- for anxiety/ mild depression.

As with many sufferers becoming unwell continuously affects mental state-understandably. Helpful on a day to day basis of coping with the illness. Doesn’t feel particularly helpful on a bad day.

puppies_o_1982835

Source: http://www.memecenter.com/fun/1982835/puppies

 

As advised by myself, word of mouth and the internet:

1. Chiropractor.

Very understanding and helpful practitioner but expensive. Helped with stretching of muscles which in turn helped with spasms and pain. Was shown some techniques for back etc. Spent around £650 over a two year period! Worth it?

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http://www.someecards.com/usercards/viewcard/MjAxMi01MzBkYzUzN2JjNDUzZGQx


2. Nutritionalist- diet, gluten free suggested.

Tried faithfully for around 6-8 weeks. Possibly helped with energy. However not enough for me to carry on. Can be time consuming and expensive- if had seen a definite improvement I would have continued.

do-you-know-the-correct-term-for-gluten-free-sugarless-vegan-brownies-31544

http://memeguy.com/photo/31544/do-you-know-the-correct-term-for-gluten-free-sugarless-vegan-brownies

 

3. Acupuncture- Had 4 Sessions.

Did not feel any difference at all-that I can remember. 

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http://24.media.tumblr.com/tumblr_mc86uv3wux1qfryqfo1_500.gif

 

4. Aloe Vera Gel.

I have never in my life and I am 30, tasted anything so repulsive! Cannot even begin to explain this vile creation, and the aftertaste is even worse. Again because I am so determined to try anything I managed to take this about 8 times. Which is incredible considering how disgusting it actually is. If you have a strong stomach this is apparently good for inflammation.

giphy
http://giphy.com/gifs/1bYaHhGtueIqQ

 

5. Juice plus capsules.

Currently trying these, not for diet control purposes but for well being  and possible improvement of immune system.

chris-rock-huh-face
 http://persephonemagazine.com/2013/01/gif-it-to-me-baby-wtf/


6.Reiki.

Tried several years ago and felt the practitioner was shite is that PC? Tried again a few months ago with a different practitioner and she is fantastic! I found this technique helps initially and lasts around 1-2 days. Normally tired afterwards however sleep well at night and feel a bit more energetic- a wee spring in my step. Would be good if have big plans the next day ie full day wedding, holiday, party. However not long lasting and expensive around £30 per session.

reiki-masters

 

 

 

http://cartoonsbysheila.com/cartoon-gallery/



7. Yoga.

Low impact exercise when feel physically strong enough. Helpful on a good day. Not helpful on bad days. Light stretches soothe aching muscles and relaxation helps with sleep. And remember the Sam and ME Yoga Class takes place on the 3rd Wednesday of every month @7pm in the Pivot Centre in Moodiesburn (yes that was a plug).

 

yoga-cat-funny-2

http://lolzplaza.com/funny/yoga-cat/

8. Massage.

Extremely helpful if joints and muscles are particularly painful. Deep massage lasts longer. Again though not long lasting and pricey.

http://www.someecards.com/usercards/viewcard/MjAxMi1mYTFhNzE2Njk0ZDZkMTk3

 http://www.someecards.com/usercards/viewcard/MjAxMi1mYTFhNzE2Njk0ZDZkMTk3

 

9.Vitamin supplements

To support immune system. Took for around 3 months, seen/felt no evidence of improvement. 

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http://www.93xl.com/gif/Vitamin-Yes

 

10. Support Group.

Best treatment so far. With people who completely understands the brain fog, the concentration issues, the pain, the extreme never ending tiredness and so on. Why not come along to ours!

 

11. Reflexology.

Next on my hitlist. Fingers crossed.

foot-reflexology-level-safari-funny-lion

http://www.babyreflex.co.uk

 

 

*Please keep in mind above are my experiences of certain “treatments” and under no circumstances should any of it be taken as Gospel.

Sam’s Scottish Parliament Speech

On the 13th May, as part of M.E Awareness day, Action for M.E held an event at The Scottish Parliament. I was asked to go along and speak at the event, about working while living with M.E. The best part was Laura got to come along for the ride too! Here’s a picture of the two of us and also a copy of my speech.

 

11013271_922822594405613_5203490391229596816_nHello Ladies and Gentleman. How are we all this evening?

 

Before we start, I just want to thank Kat and Action for M.E for inviting me to speak tonight.

 

My name is Samantha McInnes. I am 27 years old, an M.E sufferer and what would technically be classed as a work-a-holic. Now, I know what you are thinking: these are not two things that necessarily go to together (and yes you would be right). I would even go as far to say these two are, in fact, polar opposites.

Before I tell you how I became an M.E sufferer who spends most of her waking time in the work place, I need to take you back a few years to 2008. I was a politics graduate from Glasgow University who, while trying to figure out what to do with her life, managed clothing shops to pay the bills. Along with that, I was a very active individual. I ran 3 or 4 times a week; I was a regular hiker and, like most people in their early 20s, I liked to party. Hard.

After one such night of hard partying, I awoke with my mouth full of blisters. I’m not going to lie to you; this was not the look I was going for. Over the course of the next few weeks, my health drastically deteriorated; I had severe sore heads and just was generally run down. It was then I went to the doctor who ran some tests and told me that I was fighting off a pretty bad virus and, in a few weeks, I would be back to my old self. A few weeks came and went and the doctor was right; I felt OK again. I even started running again.

Unfortunately, after a few months I had to stop as, instead of doing my usual and spending an hour running several miles, I struggled to leave the borders of my small town housing estate. I constantly had severe sore heads; my body was always in pain; I stopped going out as much. As time went on, exhaustion took over. Two years after I had that virus, I was finally diagnosed with M.E.

Over the next 8 months I spent the majority of my time in bed or attempting to go to work. I tried to push through the ME barrier and failed every time.

Finally, in February 2011, I hit my lowest point.

I went to Manchester for a conference for work. My legs became extremely sore and weak. I spent the next year learning to walk again and the next year and a half using walking aids.

During this time many people said to me, “Samantha you may never be able to walk again, never mind work,” and do you know what I thought? “Na! Not me! I am beating this.”

I knew that it would be a long time before I could even attempt to go back to work in the shop again. Even though I was physically exhausted and in a lot of pain, I figured that I could probably spend around 30 minutes, 3 days a week, writing on my computer.

So I did.

I started a blog from it, telling an honest and extremely funny story about what it’s like to be a walking-stick-wielding 23 year old living with a long term health condition. Now, many people look at me strangely when I describe my blog as being funny, but I am a very positive person and part of that, I think, is because I can always find humour in every situation. It’s amazing how the funniest things can happen in the worst moments and, if you check out www.samandme.org, you can read all about mine. (Yes, that was a shameless plug).

After a while I thought: you know what I could probably spend another hour every so often doing something else now… By then, a lot of people who followed my blog had contacted me looking for someone to speak to. As a result, I started a support group. We met once a month a discussed the realities of living with this misunderstood condition.

Exactly one year after my legs stopped working, while still using my sticks, I returned to the workplace. There were several reasons for this. Firstly, I missed having something to get up for in the morning: a purpose. It’s really depressing getting up in the morning knowing you have nothing to get up for. It’s amazing how much of your self-worth can be wrapped up in your career. I also genuinely hated being on benefits; I am a proud independent individual but mostly I found it very stressful. When you are that ill you can’t walk to the toilet, the last thing you want to have to do is have to prove with forms that take hours to fill in and appointments with individuals who aren’t necessarily concerned for your well-being.

I understand that these measures are in place because some individuals do abuse system. I get that, I really do. However, when I was at the lowest point of my life, all these measures contributed to was stress that made my condition worse.

I would like to tell you my road back to work was an easy one, but it wasn’t. The company I worked for at the time had possibly the worst HR department known to man. It would take them months to send out letters and, when they did, the information was out-dated or incorrect.

I was extremely lucky as my manager at the time was extremely empathetic and accommodating. Because of this, I managed to reduce my role within the company from manager to an administrator. This meant, instead of managing shops and being constantly on the go, I could sit behind a desk and check paper work: low impact and low stress.

This allowed me to start back work at a desk job doing two, two hour shifts a week (which, let me tell you, knackered me at first). For several weeks, I did nothing else but work for two hours 2 days a week and rest. After a while, however, it got easier. Over the course of the next year, through taking my time and working with a manager who cared and understood my condition, I managed to not only increase the hours I worked but also increased the time I spent working on the shop floor and being on my feet (by this time I was no longer using walking sticks). After a year I was finally able to work full time again.

That was two and a half years ago now. I no longer work in the shop as I have found my true calling in life; I am now a non-destructive testing technician. I know what you guys are thinking: ‘I don’t think that’s a calling Sam as we don’t actually know what that is.”

Well let me tell you, NDT is basically the testing of welds, castings and other big metal things using Ultrasonics, radiography and other sciencey type things. As you can imagine, this is not done in a nice office, it’s done out on site, on boats and big structures for the oil industry, which means I get to climb about like a kid in a playground. I now have a very manual and energetic job. I would not have managed this without the time help and support provided to me when I returned after being off for a year.

Do I still struggle with M.E? Oh yes, everyday! To be able to do the job I love and work full time, I have to sacrifice things. I can’t go to the cinema on a weekday after work without falling asleep. It really irritates my boyfriend as he pays £9 for a cinema ticket and I fall asleep after 30 seconds. I have to make sure not to exert myself too much during the week and make sure I get enough rest to enable me to get up and go to work everyday. It doesn’t help that I have also recently started my second degree, which now takes even more of the little spare time I have.

I am lucky as, once again, I have an employer who understands that sometimes I just get not well and can’t come to my work. My sickness for the whole of last year was 3 weeks, which for an ME sufferer is amazing! For an employer, however, that’s terrible. Nevertheless, they understand and support me when I am having bad times.

Today I am an M.E Sufferer who works full time, is studying for a second degree and runs a support group. Not to blow my own trumpet but that is pretty much unheard of. I would like to emphasise, however that I am the exception, not the rule. I would like to stand here and say I did it all myself through my strength and determination, but that would be a lie. I am standing here today telling you all this because I have amazingly supportive friends and family. I also found a physiotherapist who went above and beyond. Additionally, I was lucky enough to find the one person in massive UK wide company who understood what it was like to have M.E. and instead of writing me off , gave me chance to get back on my feet. She could have easily have said, “No Sam. You have 6 weeks phase in period and after that six weeks you need to be working full time and not in reduced role.” That may sound harsh however it’s a story I hear regularly at my support group. If that had happened, I would not been standing here today. I would have had a relapse and would still be trying to get over it.

It just goes to show you – if an employer takes the time out to learn about ME, and support those with it the rewards can be massive.

Thank you for your time and check out www.samandme.org