A systematic review of metabolomic dysregulation in CFS/ME/SEID

Posted on 05/22/2020 by wames

A systematic review of metabolomic dysregulation in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Systemic Exertion Intolerance Disease (CFS/ME/SEID), by Teilah Kathryn Huth, Natalie Eaton-Fitch, Donald Staines & Sonya Marshall-Gradisnik in Journal of Translational Medicine vol 18, no. 198 (2020)

Review abstract:

Background:
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis/Systemic Exertion Intolerance Disease (CFS/ME/SEID) is a complex illness that has an unknown aetiology. It has been proposed that metabolomics may contribute to the illness pathogenesis of CFS/ME/SEID. In metabolomics, the systematic identification of measurable changes in small molecule metabolite products have been identified in cases of both monogenic and heterogenic diseases. Therefore, the aim of this systematic review was to evaluate if there is any evidence of metabolomics contributing to the pathogenesis of CFS/ME/SEID.

Methods:
PubMed, Scopus, EBSCOHost (Medline) and EMBASE were searched using medical subject headings terms for Chronic Fatigue Syndrome, metabolomics and metabolome to source papers published from 1994 to 2020. Inclusion and exclusion criteria were used to identify studies reporting on metabolites measured in blood and urine samples from CFS/ME/SEID patients compared with healthy controls. The Joanna Briggs Institute Checklist was used to complete a quality assessment for all the studies included in this review.

Results:
11 observational case control studies met the inclusion criteria for this review. The primary outcome of metabolite measurement in blood samples of CFS/ME/SEID patients was reported in ten studies. The secondary outcome of urine metabolites was measured in three of the included studies. No studies were excluded from this review based on a low-quality assessment score, however there was inconsistency in the scientific research design of the included studies. Metabolites associated with the amino acid pathway were the most commonly impaired with significant results in seven out of the 10 studies. However, no specific metabolite was consistently impaired across all of the studies. Urine metabolite results were also inconsistent.

Conclusion:
The findings of this systematic review reports that a lack of consistency with scientific research design provides little evidence for metabolomics to be clearly defined as a contributing factor to the pathogenesis of CFS/ME/SEID. Further research using the same CFS/ME/SEID diagnostic criteria, metabolite analysis method and control of the confounding factors that influence metabolite levels are required.

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Difficulties of living with an illness not considered a “Disease”: focusing on the illness behavior of ME/CFS patients

Posted on 05/20/2020 by wames

Difficulties of living with an illness not considered a “Disease”: Focusing on the illness behavior of myalgic encephalomyelitis/chronic fatigue syndrome patients, by Natsuko Nojima in Departmental Bulletin Paper, Osaka Human Sciences Vol.6

 

Paper abstract:

This paper focuses on the illness behavior of patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) to clarify difficulties in their lives through comparison with a five-stage model of illness behavior.

[Suchman is the one who describes the five stages of illness behavior namely: Symptoms, sick role, medical care contact, dependent client role, and recovery.] https://tinyurl.com/ycbldvx8

ME/CFS is considered a typical disease with medically unexplained symptoms (MUS), which refers to a condition where symptoms suggest the presence of a physical disease whose cause cannot be found by examination. Although previous studies of ME/CFS have focused on specific events, such as diagnosis, and the psychological changes that accompany them, the chronological events experienced by patients and the transformation of the problems they face have not been adequately grasped.

This paper analyzes ME/CFS patients’ illness behavior through interviews and explores the difficulties patients face at each stage of illness behavior. In ME/CFS patients’ narratives, their illness behavior shows complexities of going back and forth between stages, rather than progressing step by step like an acute illness.

The seemingly excessive treatment behavior called “doctor shopping” is actually linked to doctors’ ignorance, suspicion, and incomprehension of diseases without a biomarker, rather than the desire of the patient to dispel an “inappropriate” label of laziness and mental illness. Indeed, it would be more accurate to say that interviewees were not accepted by several hospitals. In addition, since patients are often suspected of not being really ill even after diagnosis, they cannot experience the dependent-patient role.

Therefore, by becoming an “active patient” by themselves, ME/CFS patients must undertake the “independent-patient role” to secure necessary treatment and welfare services. It should be noted that these patient behaviors are not undertaken for secondary gain but are due to their having no other way to receive necessary care.

NB Full paper not available

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Save4Children – helping children with ME in psychiatric wards

Posted on 05/19/2020 by wames

Save4Children – helping children with ME in psychiatric wards

 

The charity Save4Children has been created by the editors of the ME Global Chronicle and helps parents whose children have been forced into psychiatric wards by authorities, to try and set them free by legal procedures.

In recent years, the Save4Children fund has directed its attention and help at the Danish ME patient Karina Hansen.

Karina had been forcibly accepted into the Neurocenter in Hammel, Jutland. On Monday November 17th, 2017, she returned back home, never to return to the clinic at which she had been staying – a clinic for patients with brain conditions.

The primary obstacle on the road to fully getting her personal freedom back was her state-appointed guardian, who had been sort-of cooperating during the duration of her forced stay at the Hammel Neurocenter.

On October 10th 2018, a judge deemed Karina to have legal capacity to make decisions about her own life, and revoked guardianship over her, with her guardian’s permission.

The Save4Children fund has been able to contribute a small amount towards undoing the  high costs this event has brought with it.

Report new cases:

Now is the time to spend this fund’s donations on one or multiple new cases. They’re still at a stage of deliberation, but if you’re familiar with any cases where young ME patients are being forced to stay at psychiatric institutions or are about to, make sure to tell them via email info@let-me.be  .

The fund is intended for parents who can’t afford to dispute such a process, who can prove their lack of sufficient funds.

New way of donating:

GBP bank details:

Account Holder: Save4Children
Account number: 70983145
UK Sort Code: 23-14-70

Address:

TransferWise
56 Shoreditch High Street
London
E1 6JJ
United Kingdom

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New ME/CFS training module for doctors & medical students

Posted on 05/18/2020 by wames

New CPD: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, May 13, 2020

 

A new training module for doctors and medical students has been developed by the CMRC Medical Education Group led by Dr Nina Muirhead, and leads to the award of 1 CPD (Continuing Professional Development) point.

It has been published on the StudyPRN website, run by Lerna Ltd, a medical education company which operates in partnership with the University of South Wales.

Dr Muirhead explains:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a common and severe complex multisystem disease with many sufferers waiting years for a diagnosis. The narrative and education to date has neither aligned with the patient experience of this illness, nor communicated the emerging biomedical evidence.

Following the coronavirus pandemic thousands of people will know how severe and debilitating the symptoms of fatigue can be. Millions will understand the experience of being housebound, but for most these experiences will have lasted days, weeks or months.

Imagine feeling viral, exhausted, unwell and in pain, confined to your bed or house, lying in a dark room for years or even decades. The world has been shocked by the damage that viruses can do, and soon we will need to examine the consequences of chronic post-viral illness including ME/CFS.

In writing this module I have started from scratch. I have drawn on the international peer reviewed literature and emerging international ME/CFS educational resources and have been fortunate to receive significant contributions from medical experts, scientists and patients.

I am humbled by the contributions of those who are severely ill and the effort and energy they have devoted to this collaboration. I recommend that you read the four pre-course peer reviewed papers before embarking on the learning module. It would be of great help if you could take a minute to click through the anonymous pre-and post-course questionnaire so that more accurate information can be gathered to help develop and update future ME/CFS learning materials.

This module is just the start. There will be some who take time picking through the evidence and I welcome your opinion and future collaboration. For others it may be an extra CPD point. For the patients who are recognised, believed and diagnosed because you have taken the time to do this learning module – it could be life changing.

Contributing post written by Nina Muirhead BA(oxon) BMBCh(oxon) MRCS DOHNS MEd PGDipDerm. Nina is also associated with or alumni of:

Oxford University
Open University
Cardiff University
Buckinghamshire Healthcare NHS Trust
Royal College of Surgeons
Royal College of Physicians

This resource is completely FREE and tackles the myths surrounding the disease, while assessing your current knowledge and educating you further:  https://www.studyprn.com/p/chronic-fatigue-syndrome

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My ME lockdown with the invisible “terrible triplets”

Posted on 05/16/2020 by wames

ME Awareness week:

My ME lockdown with the invisible “terrible triplets”

 

I have been living in ME lockdown on my own, yet it doesn’t feel as though I am alone. 

My lockdown experience started long before Covid-19 appeared on the scene as I have been ill for many years, often unable to leave the house for weeks or months at a time. This new lockdown has just added another layer of complexity to my life.

The will to get better is there and I desperately want to live a productive, peaceful life, but my brain and body don’t listen to me, or each other, and won’t cooperate. They’re like troublesome children who argue and fight no matter what I want, or what is happening in the outside world.

My body

My body misbehaves in so many ways, some of them most unexpected – painful muscles and joints, shooting pains, minimal energy reserves, post activity delayed reaction, haywire temperature regulation, sensitivity to prescription meds. I could go on!

You’ve heard of ‘brain freeze’ after eating ice cream? I get ‘body and brain freeze’ when overstretched. All of a sudden my temperature plummets, I go cold all over and I am in agony.  The sun has been shining outside during lockdown. People are gardening, sunbathing and having barbecues in their back gardens, (or risking illegal trips to the beaches and parks!). I remain indoors fully dressed, plus dressing gown, wrapped in a thermal blanket, shivering in bed with the electric blanket on, sometimes for hours or days, attacks coming back to back sometimes!

Then just as suddenly heat surges take me over and trigger a polar opposite experience.  I have days where I am super sensitive to light and sound and need to cocoon myself in a quiet darkened room until my tolerance levels increase. Some days I get eye distortion, even double vision, and cannot see clearly. The harder I try, the more difficult it becomes and again some downtime is needed.

My brain

My brain really lets me down frequently. Some years ago I earned the equivalent of 2 degrees but now my brain rarely works well and frustration reigns. I find it hard to follow, absorb, process and retain information. The concentration required really hurts. Sometimes the more active my body is the more impaired my brain functions become, as though it is being cooked in a pressure cooker. My brain processing power ceases but the pressure & pain continue and all the things I once learned to do, I rarely can do.

Pronouncing or spelling familiar words can be difficult.  Although I once excelled at maths without using a calculator, I now find basic calculations near impossible, even with one. My brain reacts as though I’ve become dyslexic with both words & numbers alike, as I struggle to make sense of what I see written down or even what I say.

Learning to shop in a different way during lockdown has really hurt my brain. I was unable to get a supermarket delivery slot but eventually discovered a local teacher who was volunteering to shop for those of us who are shielding. She turned up as planned to get my shopping list. Momentarily forgetting my recalcitrant brain I gratefully gave her a list of 6 items (2 pate, bread, cereal, milk, chicken). She looked puzzled, but I assured her that was all I needed. Once she had brought the shopping and I had put it away, I looked around the kitchen in horror, wondering what I was going to eat for the next week! I have been too embarrassed to contact her again, yet.

An acquaintance who lives some distance away offered to collect shopping for me. He helped me find a supermarket with a click & collect slot & spent at least 4 hours over a few days making and amending an order for me, as I tried to work out the most important 80 items I needed. Then he drove nearly 100 miles round trip to collect and deliver it to me. I was very touched and grateful and gave him a cheque. I was mortified when he got home and noticed it was unsigned. Another bad brain moment! Fortunately he had a sense of humour.

Cognitive difficulties are not a sign of low intelligence, a behavioural problem or a learning disability, but they really can make you feel daft.

My belly

And then there’s my tummy. It is such a problem it also has a life of its own – pain, food intolerances, bloating, diarrhoea etc.  Most of my stories about this family delinquent are too unpleasant to relate! I got so tired of watching doctors nodding sagely and unmoved when I mentioned the bloating that I took a selfie so they could compare it to the person in front of them. That got their attention! As you can imagine I have been offered seats to sit my weary pregnant body down on (though I was not of an age where pregnancy was possible) – a bittersweet moment to be considered so young.

I was pleased to receive 2 food boxes recently. Although I communicated my dietary restrictions beforehand they were misinterpreted, maybe unable to accommodate. I found half the items were unsuitable, which made me then feel ungrateful, and guilty at depriving someone else, because I couldn’t return them.

The terrible triplets

The terrible triplets. 24 hours a day, 365 days a year these triplets have minds of their own. My ME lockdown is not imposed from outside, by governments or health services, but by my own discontented and argumentative ‘family’. I call them the ‘3 Bs’ and not just because of the alliteration!

The hardest lesson in my life is to learn to accept my new self and life difficulties with humility and kindness, forgiving myself for my lack of previous abilities. I have to postpone activities that use physical or cognitive functions knowing there will be moments later when I get to catch up on critical life tasks. And there will be the odd momentary flash of the old me, which is still within me and can bring me joy, and then sadness as my abilities retreat again.

It is a real relief when the triplets calm down a bit and I can focus on something useful, productive, even enjoyable, when I can inhale a breath of sanity before chaos resumes. What impact does this have on my mental health? I sometimes think I am going doolally, but mostly I just try to remember to acknowledge that anxiety and depression are normal side effects to such a chronic health condition, and wait for them to pass.

People only see me occasionally, on better days, not when I am behind closed doors. It is difficult to communicate to people the difficulties I deal with on a minute to minute basis. I don’t talk about the invisible triplets obviously. That might lead me up the path to the asylum on the hill, though I’d happily go if I could leave the terrible triplets behind!

8 weeks into Covid-19 lockdown. 

12 years 5 months into my ME lockdown.

PF, Wales

PS Thanks to my ‘editor’ who made sense of my incoherent ramblings and scribbles!

 

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Poem: Words escape

Posted on 05/15/2020 by wames

ME Awareness week:
      Words escape, a poem by Derryan Paul

 

 

 

 

 

 

 

ME affects the brain.
Words escape. A sentence
on a page is meaningless,
and yet, you know there is
a meaning somewhere there.

If you are patient, read it
again, you understand.
You misread a word, altered
sense quite clearly expressed,
invented gibberish.

Poetry’s impossible.
A string of words, threaded
like beads down a page,
remains a mystery.
You fail to see the thread.

Writing is so difficult.
Letters misform. Typing
is hit-and-miss. Process
the words, and like a stick,
spell-check helps you to limp.

               Derryan Paul, 1997,  Mid Wales

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Gwyneth’s ME story part 3 – walking for ME

Posted on 05/15/2020 by wames

ME Awareness Week:
Gwyneth’s ME story part 3 – walking for ME

 

Gwyneth Hopkins is one of a small percentage of people who has recovered from ME within 5 years. Here is part 3 of her story. Part 1 & part 2 cover her experience of ME and her path to recovery.

Staying healthy…and helping others

After recovering I went to college to study natural nutrition to help me understand how to keep my body healthy.  I went on to train in some of the therapies that I feel played a big part in my recovery. I am now a part-time Reiki Practitioner and Master/Teacher, a Bach Flower Remedy Practitioner and Em-Power Therapist. It’s nice to be in a position to help others after all the help I received during my illness.

By the end of 2003 I was back riding horses and walking in the hills. However the pressures of the illness on my marriage became too much and I was divorced in February 2005. We had only been married for 18 months when I became ill. The marriage lasted 8 years, 5 of them I was sick. We have stayed friends though, and he’s now happily remarried.

During my illness I used to imagine being well and riding across Wales from south to north, but I couldn’t afford to keep horses now I was divorced. After I’d been recovered for a couple of years I knew I’d be safe to push myself so I decided I could walk it instead. I had never done anything like that before, but after not being able to walk more than a few yards for years it seemed like the most exciting thing to do.

Coast to coast – my first walk

In June 2006 I walked from Aberavon sands near Port Talbot to Penmaenmawr on the north coast, 230 miles in 3 weeks. I had a big rucksack carrying minimum camping equipment, a change of clothes, OS maps etc. It weighed 16 kg when I started but I soon got it down to 15kg. I’m only 8st 2!!

Most people thought I was crazy and that I’d never manage it. My sister Liz had cycled from Lands End to John O’Groats in her younger days so she understood and was very supportive, as were the people I worked with in Monmouth sports club. I was determined to try.

I didn’t want a fixed route or time schedule. I chose 5 places to pass through as a guide, including  Llandovery, Devils Bridge, Cadair Idris and Mt Snowdon. I used OS maps and just planned my routes daily as I went. If I got to a split in the path I’d choose the one that looked most interesting!

Other than that I made my way across hill tops and farmland not knowing where I would sleep (sometimes wild camping, sometimes on small camp sites) or where I would eat next. It was such a sense of freedom! I often slept 10 hours a night and didn’t miss a bed, but accepted a kind offer of accommodation for the night from people with ME in Tregaron and Ysbyty Ystwyth. It was the bath that was the real treat. I often washed in cold streams and would fantasize about soaking my tired body in a hot bath!

Some footpaths were just sheep tracks so I had to be careful with my navigation, the stiles across farmland were usually in a corner and over grown with nettles and brambles. I had to bash my way through and often had scratched legs. Some paths had fallen trees etc. blocking them and then it was it was a real scramble with a big pack on my back.

“When asked why I do it I say because I can and it’s a joy to feel well and be out in nature again after spending years in bed. If I can help inspire people with ME  at the same time, that’s great.”

I usually carried enough food for about 36 hours but I didn’t have anything to cook with, so it was all cold. Sometimes on a farm camp site a kind camper would give me a cup of boiling water for one of my herbal T bags or give me some hot baked beans. I made a point of going through a village where I could buy food or have a hot pub lunch once every few days.

In the spotlight for ME

When I told some people with ME about my planned walk they asked me to raise money for MERGE (now ME Research UK). I agreed and then spent 6 weeks promoting the walk in the press etc. In fact a friend made me a web site and soon people with ME were picking it up and contacting me.

During my walk I raised as much publicity for ME as I could by getting into local papers and on radio. BBC radio Gloucester had given me a tape recorder to talk into daily. When I got home, edited bits of that went out on the radio every day for 3 weeks. I also spoke live on other radio stations, trying to tell people what it was like having ME.

I carried flyers explaining what I was doing and gave them out as I went. On the whole people were amazed and handed me cash or donated on my Justgiving page. In my opinion most people who are aware of ME only see the people who don’t have it so badly or are partly recovered, they don’t realise that a large proportion of people with the illness are either bed or housebound.

A lot of people with ME, and others, were following my walk and I had loads of people ringing me on my return. I had given out my number then, as I do now, offering to chat, and I was on the phone most days after work to people with ME who enjoyed talking to someone who knew what they were going through, also to some of their carers. Carers are amazing people, usually family members who go through a lot when they see the person they love suffering. They themselves can get overtired and stressed looking after them. Thanks to them all!

Interesting encounters

I hadn’t been sure if I could reach my destination but I got fitter the farther I got and people were so supportive along the way. I also met many people with ME.

The most interesting contact was from a lady in the US who had ME. She asked if I was going through Llanddewi Brefi on my route. I replied no. I was going about 15 miles east of there. She said “that’s a shame, my grandmother is buried there and I’d like a photo of her grave.” I replied “I’m going there now, as this is a walk for ME”

I also met a Chilean mountain biker on his holiday. He had stopped to have lunch and asked me what I was doing but couldn’t understand much. I gave him my flyer. Later he caught me up, he’d been trying to interpret it. He was full of praise in broken English and insisted on giving me a carton of apple juice. When I got home I saw there was £20 from Carlos on my Justgiving page!

I had expected wonderful scenery and I certainly got it. Mostly in very hot weather but it turned wet by the time I walked up Snowdon. But the best thing I shall take from that walk was the amazing people who helped me along the way, and their stories.

One day I went down a foot path that went past a remote cottage of a lady with ME. She saw me and invited me to lunch and I stayed a few hours chatting. Once going through Llandovery I turned up a road mistaking it for one 100 yards further up. It took me up a steep hill and at the top a man was gardening and stopped to tell me his daughter was housebound with ME and he gave me £10 for MERGE.

But the best thing I shall take from that walk was the amazing people who helped me along the way, and their stories.

One goal reached – now I was hooked!

I had promised friends that I would finish by going into the sea when I reached my destination. I had arranged to meet a press photographer and friends who had come to take me home at 2 pm. It had gone cold and I had been wearing a fleece and waterproofs on the last part of the journey. I stripped down to my charity T shirt (but kept the thermal top on underneath) and ran into the sea and threw myself under.

 

Had I not had ME I wouldn’t have had the idea or the courage to undertake such a trip on my own.

I was elated that I’d managed it after years of pain and just lying in bed feeling utterly useless. I was also feeling very sad that it was over, it had been such an amazing trip. Had I not had ME I wouldn’t have had the idea or the courage to undertake such a trip on my own.

I enjoyed it so much I went on to do walks from 110 to 168 miles over the next few years, for charity. I gave it up in 2015 at the age of 64 after a 168 mile walk which took my total to over 1,000 miles. I raised over £7,000 mostly for ME Research UK but some for Get kids going who supply sports wheelchairs for kids.

I could tell endless stories about my trips 🙂 and I am very proud to have been able to raise awareness and give hope to people with ME.

Gwyneth Hopkins, South West Wales

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Gwyneth’s ME story part 2 – my route to recovery

Posted on 05/14/2020 by wames

ME Awareness week:
      Gwyneth’s ME story part 2 – the route to recovery

 

Gwyneth Hopkins is one of a small percentage of people who has recovered from ME within 5 years. Here is part 2 of her story. Part 1 covers her experience of ME and can be read here.

 

Tackling the physical causes

I was lucky to have a District Nurse come to see me during my illness to give me iron injections for my anaemia (they were later taken off the market!!). She also gave me Reiki, a form of hands on healing. This helped calm me and reduce the stress and pain, also helped me to adapt to the fact that I was so ill and felt totally useless. She also advised me to have Vega testing because she thought I had food intolerances. She was right.

I tried acupuncture, which balanced my body thermostat and stopped me from feeling permanently freezing cold.

I was then lucky to hear of a very good Master Herbalist, Philip Weeks.  He detoxed my colon, liver and kidneys. It involved taking all sorts of unpleasant mixtures, which made me feel worse while I was taking them because of the healing reaction. I always felt a lot better afterwards. I was treated for bacterial infection, organo-phosphate poisoning, radiation, heavy metal poisoning, viral infections, Geopathic stress and other things, mainly with herbal remedies, but also by some other really good complementary therapists.

I was advised by Philip to eat a vegan diet and drink 2 litres of filtered or bottled water daily. I’d already given up caffeine, alcohol, sugar and most processed foods. I kept to the strict diet. These treatments were ongoing and sometimes expensive, but worth every penny because they worked and the therapists were always very supportive and understanding.

I wanted to reduce the chemical overload on my body, which meant not only giving up chemicals in food where ever possible but also stopping the use of chemicals in the home. I use Eco-friendly products to replace sink and toilet cleaner, to wash clothes, wash up the dishes and floors etc. instead of ones without all the harmful chemicals in them.

It was pointed out to me that we absorb about 60% of the chemicals we rub into our skins which is even more worrying when you think that what’s in hair dyes, face creams etc. can easily be absorbed into the brain, damaging our nervous system. There are lots of good alternatives on the market today – usually found in health food shops or online. For people in good health these substances may not cause a big problem, but with ME you have little energy to support your detoxing organs like liver and kidneys, and the substances can build up like poisons in your body. Your liver is a major filter and it just gets blocked.

I have replaced perfumes with aroma therapy oils, they not only smell nice but they have therapeutic uses as well.

In December 2001 I had my amalgam fillings out by a top Harley Street Specialist because I was told it would help with my mercury overload. Within days my brain function returned to almost normal. All my concentration levels, bad memory and fuzzy heads improved dramatically within days. Removal of fillings must be done by an expert, otherwise you could swallow or inhale more mercury and become worse! It is unusual to react so quickly it was expected to take months.

Facing up to emotional stressors

I also found it was no good just treating physical symptoms, we need to treat the emotional side at the same time.

In my opinion the factors that can lead to ME include stress, caused by everyday things – pressures of work, exams, bereavement, divorce, abuse or physical injury, – can lower our immune system, which is probably already under-functioning – on top of stresses like organophosphate poisoning, vaccines and viruses. This can occur gradually over years (or a lifetime).

Once the immune system is low we also become more vulnerable to picking up viruses. Our body filters, like our liver and kidneys become weaker and less able to eliminate substances like organo-phosphates and other chemicals. Once the body is out of balance we can develop other problems like candida and a leaky gut, then we are unable to absorb the food we eat properly leaving us deficient in essential nutrients. Left untreated we just become weaker and weaker.

I found it necessary to go back over any emotional problems in my life and ‘release them’ either with the help of complementary therapies, or by talking – discussing them with a knowledgeable friend, in my case the District Nurse. This helped me release any feelings of resentment, grief, guilt or anger etc. I believe that we hold emotions at a cellular level and until we have dealt with and released them they can cause us physical problems.

If you didn’t have many emotional issues to start with, suffering from a serious illness for years often leaves you feeling grief for your past life, and guilty that it is affecting all the people you love, as they worry and care for you. You can have too much time to ponder on all the negatives!

Bach Flower Remedies

When I got well enough to hold a book I also found reading about Inner Child work and Psychotherapy helped me to understand how we hold onto and how to release emotions. Reiki, Bach Flower Remedies and Em-Power Therapy helped a great deal with balancing and releasing emotional trauma.

There isn’t only the past trauma to deal with, there are all the stresses of living with a serious illness that still isn’t understood by, or in some cases believed by, the general public and even some doctors. That is so very hurtful!

It leaves you feeling isolated and guilty that you’re ruining the life of others around you.

To sum up

This is just a brief account of how I recovered, it was hard work and I was lucky to have had the support of my family and an excellent District Nurse. I believe that some of the methods I used could help most ME sufferers but we are all individuals and need to make our own choices.

I have learnt a lot about complementary medicine, healthy diet and lifestyle during my illness. It took me years to collect my information and I’m still searching to find ways I can help people and myself to improve good health and reach my positive potential in life.

I think you have to take responsibility for your own health. Follow your own path and do what feels right for you. Trust your intuition.

If you would like to discuss any of this with me, or find out more about my long road to recovery, call me on 01554 891551 or email gwynrhopkins@hotmail.com  I’m happy to share my experiences or just listen to yours.

Gwyneth Hopkins, South West Wales

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What’s the difference between Covid-19 and ME?

Posted on 05/13/2020 by wames

ME Awareness:
        What’s the difference between Covid-19 and ME?

 

It is hard not to see many glaring differences between the attitudes to the illness I have struggled with for years and the latest public health threat.

Covid-19 is generally accepted to exist, considered to be serious, and widely discussed and researched.

ME hasn’t been widely accepted in the medical world or by the general public, even by our friends and families sometimes. Understanding is patchy and research underfunded.

Covid-19 can be avoided by self-isolation and shielding. Or by wearing personal protection, using lots of soap & water & sanitiser and avoid touching your face.

ME comes uninvited, without warning, though it could have been avoided for some if the medical profession had given advice not to push themselves following a virus.

Covid-19 – the population is told we’re “in it together” for the good of all.

ME people, along with people with other disabilities, often feel on the margins of society, isolated and not seen.

Covid-19 treatment advice is fairly clear and consistent. Plan A: self-isolate with fluids, rest; take pain relievers. Or Plan B: call 111 if it gets worse.

ME affects people in different ways and fluctuates, so our coping strategy changes. A, B, C – are there enough letters in the alphabet to describe all the things people try, hoping to feel better, to avoid a relapse?  So called experts can’t agree. Exercise – don’t exercise. Resist unhelpful illness beliefs – accept and adapt. Medication – no medication.

Covid-19 lockdown support has grown when needs were made known: priority delivery slots, food parcels; prescription deliveries; furlough; mental health check-in calls; help from banks, insurers, mortgage companies etc. etc.

ME – being housebound with ME does not trigger the same concern and practical support.

Covid-19 – everyone is encouraged to stay in touch with those self isolating and in lockdown, and to keep an eye on others’ physical and mental health, as well as their own.

ME – it has been hard to make people understand how difficult it can be to manage a complex health condition and how isolated and invisible we can be for months or years on end.

Covid-19 restrictions will come to an end and life will return to normal.

ME is for life, for most of us. There will be no return to normalcy, just constantly learning to adapt to the limitations of our bodies and brains.

Covid-19 can kill if given the chance.

ME rarely kills, but can be a living hell.

It is reassuring to see how understanding, proactive and caring our society can be. I hope these positive attitudes and support structures can be absorbed into our future, and become part of the ‘new normal’ for people with ME on a long term basis.

PF, Wales

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‘Staying at home’ with ME – Sarah’s story

Posted on 05/13/2020 by wames

ME Awareness week:
‘Staying at home’ with ME – Sarah’s story

 

Having had ME for 27 years I’m not expecting to get better.

Every day requires time spent lying down, experiencing pain in my muscles and joints and sensitivity to noise, smells and light.

Here’s the set up in my bedroom – books, stitching, films and body cream – my skin is sensitive and itchy.

Sometimes I can’t pull the covers on my bed up as I don’t have the energy. I have lots of covers even in summer because I’m always cold.

I no longer think much about my illness and no longer grieve what I’ve lost in terms of career. I’m sad I can’t do things though, my low energy doesn’t allow the swimming, cycling or walking I used to enjoy- I can still do some at a lower level.

I never feel I’m thinking clearly and often feel vague or unfocussed.

Being housebound isn’t a new experience for me. I’m fortunate enough to live fairly comfortably and have some outside space. I even have a summerhouse so I can lie down in a different space.

Sarah, South West Wales

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