Clare Berrington’s Story (Carer Story)

ME/CFS
Written By Katy McGhie
“As his mother, I modelled poor boundary keeping, people pleasing, over working, never relaxing, always running around. He learnt the first 2 of these traits well!”
 

  • The Situation He Was Born Into

    • Born into a family grieving the loss of a first child to motor neurone disease.

    • Parents were under heavy stress, with no local family support and a mother caring for her parents with dementia.

    • Nearly died at three weeks from meningitis; often unwell and fatigued in early childhood.

    • Showed mind-body and neurodivergent traits, hypermobility, and social struggles.

    • Learned people-pleasing and poor boundary habits from his mother’s behaviour.

    His Childhood

    • Grew up with a loving but volatile father and a caring but overstretched mother.

    • Learned to repress emotions and “tiptoe” around others to keep peace.

    • Parents separated when he was eight; described his childhood as happy overall but tinged with emotional caution.

    • Early family stress likely wired his nervous system for fight-or-flight, increasing vulnerability to illness.

    The Illness

    • Became ill at age 13 after a viral infection; never fully recovered and was later diagnosed with ME/CFS.

    • Became largely housebound for two years, fatigued, in pain, and isolated.

    • Lost his friends and spent much time alone while his mother worked.

    • Tried Mickel Therapy briefly but was too young to grasp it; his mother applied its principles informally.

    • His mother noticed patterns between stress, symptoms, and emotional triggers.

    Dawning Realisations

    • Stressful events or perceived disapproval instantly triggered symptoms.

    • Possible explanations: fear of rejection, need for safety, or emotional repression.

    • The brain reinforced these symptom pathways until even small triggers caused strong reactions.

    • Positive experiences quickly eased symptoms.

    • “Aha” moment: praise and positivity rapidly reversed symptoms during a simple DIY task.

    Parenting a Child with a Chronic, Curable Condition

    • Son remained passive about recovery; mother could only offer subtle guidance.

    • Completed A levels over four years, reached partial recovery via ANS REWIRE, then plateaued.

    • Took a year off before university; relapsed during second year due to stress.

    • Mother planned a firm boundary talk, but he initiated his own decision to focus on recovery first.

    Recovery

    • Completed three sessions of Mickel Therapy at age 20, leading to rapid improvement.

    • Declared himself 100% recovered within weeks.

    • Returned to university, graduated with an engineering degree, now works and climbs regularly.

    Effect on His Development

    • Still struggles with lifestyle balance and social connections.

    • Recognises stress-related symptoms and can usually resolve them quickly.

    • Retains awareness of nervous system sensitivity and emotional triggers.

    Looking Back

    • Mother accepts her parenting and circumstances without blame but recognises their impact.

    • Learned to adjust behaviour, build his confidence, and apply brain-training principles.

    • Found recovery information difficult to access; most support groups focused only on symptom relief.

    • Felt recovery was possible but poorly understood or shared.

    Looking Forward

    • Now retired, she aims to share her learnings to make recovery resources more accessible.

    • Motivated by love of learning, teaching, and helping others.

    • Sees her experience as a “win-win” – healing for her son and a mission to support others.

 

    • My son was born into a family who had lost their first child, had no family support and parents who had a less than ideal relationship.

    • He nearly died at 3 weeks with meningitis, was continuously ill as a young child with colds, was always tired, had Mindbody personality traits, was hypermobile, had some social struggles and had neurodivergent traits which presumably added further stress.

    • As his mother I modelled poor boundary making, people pleasing, over working, never relaxing, always running around, high expectations. He learnt the first two traits well!

    • His father was well-intentioned was not much involved with child care. He was also rather volatile so there was a lot of tip toeing around him i.e. repressing emotions and not living in an authentic way.

    • His parents separated when he was 8.

    • Hypermobility

    • Possible mild autism

    • Moderate asthma from about 6 months but petered out and gone by onset of ME/CFS

    • Excellent support and education from a consultant OT with a PhD in ME/CFS. We saw her for about 18 months by which time he had plateaued at 40% of his normal level of activity.

    • Fun - Origami, juggling, Diablo, Bowls, 10-minute nature walks, computer games, shooting range, frizbee, boomerang, kite flying, lego, rubix cube, photography, – all lifted his spirits and improved his stamina.

    • 4 1/2 years in he remained plateaued so we did an online mindbody recovery program, ANS REWIRE. He did not complete the course because within 4 months he jumped to 80% and he didn't feel the effort to continue was worth it.

    • He remained plateaued and 8 1/2 years in, he returned home after 2nd year at university due to stress.

    • Did 3 sessions of Mickel Therapy and recovered to 100% within weeks.
      1 1/2 years later he remains well.

  • 9 years

  • The only books that were helpful when he was initially ill were:

    Now I would also recommend:

    • Healing Back Pain (Reissue Edition): The Mind-Body Connection by John E. Sarno M.D.

    • Breaking free by Jan Rothney

    • How the mind can heal the body by David Hamilton.

    Books for your child I would recommend:

    Recommended recovery programmes:

    Recommended YouTube videos:

    Nervous system regulation:

    • Insight Timer app. My son didn't like nervous system regulation but this app is excellent and has 5 minute exercises on meditation, breathing, visualisations, bedtime stories, gratitude, little educational talks etc for children.

    • Nichole Sachs has a podcast for young people on using a special Mindbody treatment type of journaling called Journal Speak, hosted by herself and a 17 year old.

      Teaching teens TMS: Anxiety, stomach aches, migraines and more (The Cure for Chronic pain 3:74 - Nicole Sachs)
      https://open.spotify.com/episode/1rzwPGfyaiJm7RgEwfEEag?si=EA0HNk7NRmKpmB7jjzylPA

    Facebook Groups:

    Most are very negative and deny that people recover, discuss only medical treatments and medical tests, feature many posts of people complaining or venting. It has been found that such dialogue increases feelings of fear which is picked up by your mind and increases symptoms. Steer clear of such groups.

    Ones that I have found useful include:

    • ME/CFS Neuroplasticity and nervous system regulation.

    • MECFS explored - ME, CFS, Fibromyalgia & Long Covid recovery

    • ME/CFS & Long Covid recovery support and inspiration.

    I have found that most of the posts in the above are based on sound, up-to-date science and research into how people have recovered. They are mainly full of very positive, supportive, hopeful people who are enthusiastic to find out how other people have recovered in order to see if this will work for them.

    Google or YouTube searches:

    If you add the word “recovery” to your search, it is likely to be more helpful.

    Carers or young people support groups:

    None I know of that I would recommend. I would only go if it supported the use of Mindbody techniques and that it has people in them whose young people are recovering.

 

The situation he was born into

My son was born into a family where his parents had lost their 1st child to a type of motor neurone disease, they had no local family support and his mother had to support her parents with dementia. This all made his parents very stressed.

He nearly died at 3 weeks with meningitis, was continuously ill as a young child with colds, was always tired, had mindbody personality traits, was hypermobile, had some social struggles and had neurodivergent traits which presumably added further stress.

As his mother, I modelled poor boundary keeping, people pleasing, over working, never relaxing, always running around. He learnt the first 2 of these traits well!

His childhood

His father was loving towards our son and well-intentioned but we had a less-than-ideal relationship and he was not much involved with child care.

He was also rather volatile so there was a lot of tip toeing around him. Our son would have had to repress his emotions and not say what he wanted to say ie not live in an emotionally open and authentic way. We separated when my son was 8.

He described his childhood up to getting ill as happy and he had a good relationship with both parents and his older sister, although he was wary of his father’s moods.

My guess is that some of the above would have provoked his autonomic nervous system (ANS) to produce an excess of stress chemicals during the development of his nervous system, causing it to be wired for flight and fight, thus making him susceptible to developing a Mindbody condition.

 
“At his worst he remained on the sofa all day due to fatigue, could hardly look at screens or hold a conversation, had nausea, dizziness, histamine/cold like symptoms, pain etc and had to raise his eyebrows to keep his swollen eye lids open.”
 
 

The illness

The acute phase of his illness was triggered by a viral infection in October 2015 when he was 13. This put him in bed for a fortnight and he never fully recovered but returned to school after about 5 weeks. I kept having to bring him home as he wasn’t well so he gradually reduced school hours and stopped going by spring. By the end of that academic year he was given a home tutor 1 hour a day, 4-5 days a week for the next 2 years. I was working 4 days a week so he was alone a lot.

He was diagnosed by a consultant paediatrician with ME/CFS. I researched which was the best ME/CFS clinic in the south of England and requested our GP to refer us. His diagnosis was confirmed by the Bath ME/CFS consultant.

At his worst he remained on the sofa all day due to fatigue, could hardly look at screens or hold a conversation, had nausea, dizziness, histamine/cold like symptoms, pain etc and had to raise his eyebrows to keep his swollen eye lids open. He was largely housebound, bored rigid and lost all his friends. One day a couple of years in he said, “I’m not having a very good life, am I?” It was heart-breaking.

Shortly after he was diagnosed, a colleague who had just recovered from 2 ½ years of ME/CFS suggested we try Mickel Therapy: we had 1 session but at age 13 this was beyond his comprehension.

However, my colleague taught me the principles so I was able to nudge him in the right direction. Her guidance using this non-medical approach was my main support and key to his recovery.

 
 
“Being mildly told off for leaving his clothes on the floor, being left alone in the house or procrastinating about doing homework would instantly cause symptoms.”
 

Dawning realisations as to what was going on

I gradually realised that he responded with strong physical and emotional symptoms to slight stress. Being mildly told off for leaving his clothes on the floor, being left alone in the house or procrastinating about doing homework would instantly cause symptoms.

  • Did his negative internal speak or a fear of losing the approbation of his mother make his brain feel he was in danger (potential loss of his care giver)? Did this put his brain into fight or flight and trigger symptom production? If so, this may have been his brain’s way to prompt him to do something about his situation.

  • Or it could be that by his brain making him appear ill, it would make it less likely that those around him would be negative to him – thereby keeping his parental link safe?

  • Or perhaps the emotions were too strong to deal with, so the brain sent out symptoms to distract him from them so he could carry on repressing them.

    I have heard all these hypotheses put forward to explain why symptoms are produced.

Initially as neither of us knew that this could be why he was getting symptoms, time went on, and we repeated the cycle of me being negative ("you've not done your homework yet") or other stressors. I guess that his brain recognised these triggers and sent out increased strength and range of symptoms in an attempt to make him notice and/or to protect him. I believe that his nerve pathways that led from receiving sensations (e.g. hearing me telling him off) to producing symptoms, all strengthened and as such it took less and less trigger to produce more and more symptoms.

On the other hand, I noticed that within a few minutes of experiencing positivity or fun, his symptoms would subside.

One day, he was half-heartedly helping me fix a sink and I kept having to tell him how to do it properly when he suddenly said “I have to stop, I feel terrible” and he certainly looked like someone had just sucked the life force out of him. I let him rest for a few minutes and while he did, I reflected that he had been absolutely fine before we started but within minutes, he was ill. I thought perhaps it was the way I was speaking to him that had caused the change. I got him to reluctantly come back and every time he did anything remotely well, I praised him. “Great holding” “good idea that” “we’ll get this sorted in no time” etc. Within 5 minutes, he was looking better and in 10 minutes the sink was fixed and so was he!

That was my great “ah haa” moment!

At 16 years he was able to return to school part time to complete 3 A levels, taking an extra year to do it at a gentler pace.

At 17 he did 5 months of the online ANS REWIRE course which made him jump from about 40-80% of his normal activity level but he plateaued as soon as he stopped.

10 months later my son told me that, “There is nothing I can do to help my recovery. It’ll just get better with time.”

 
 
“I warned him that if he had to come home from uni because of his ME/CFS, he would have to go to live with his father as I had done all I could to show him how to recover and returning to me would not help him.”
 

Parenting a child with a chronic, curable condition

I was so frustrated with his passivity towards getting himself better and could only give slight hints every now and then as to what he could do, otherwise he would put up a wall and ignore me altogether. I emailed his father that he seemed to have forgotten the key points of his ANS REWIRE recovery plan and requested that he try to persuade our son to watch the videos again. I don’t remember if he did suggest this, but my son didn’t watch them.

He had a year off after his A levels as he couldn’t face going to university straight away but the following year he started an engineering degree.

Before he went, I warned him that if he had to come home from uni because of his ME/CFS, he would have to go to live with his father as I had done all I could to show him how to recover and returning to me would not help him.

After 2nd year at uni he was so stressed he felt that he couldn’t go back for 3rd year. I gave him the summer off without saying anything but set myself a deadline of the week after his exam results before I was to remind him of that warning. I was going to tell him that he could only stay at home if he did a recovery programme as I was not going to stand by and watch him waste any more of his life completely unnecessarily. He received good exam results. The day came and I put it off deciding to talk to him until after dinner. I was so nervous I could hardly eat. We get on really well so I did not want to kick him out, but I knew that this was the last opportunity I would have some leverage with him. I opened my mouth to talk but he beat me to it.

“Mum, I thought I’d use this time to concentrate on completing on my recovery. What do you recommend I do?”

I said “Thank XXXX for that! Because I was about to say to you …!”

 
“He is... working in a climbing centre, has qualified as a climbing instructor and after standing up during his 8-hour shift, often stays on to climb with his friends.”
 
 

Recovery

Over the next month he did 3 sessions of Mickel therapy. This gave him further insights into the causes of his symptoms, how to manage his daily routine and internal speak and led to significant improvements within weeks. Shortly after, he felt he was 100% well.

He returned to university and is now 23, has a good degree and while applying for an engineering job he is living at home, working in a climbing centre, has qualified as a climbing instructor and after standing up during his 8-hour shift, often stays on to climb with his friends.

Effect on his development

I don’t know whether he would be any different if he had experienced a normal adolescence, but he still doesn’t lead a particularly balanced life – up too late, too many screens, when not at work he hardly goes outside, and due to losing his friends when ill, although he has lots of non-local Uni friends, he doesn’t have any at home. This isn’t conducive to a healthy nervous system. When he gets symptoms, he often says they are “just a cold” but when I point out what his current stresses are or just raise an eyebrow, he might then acknowledge it as CFS symptoms. If he deals with it, the symptoms disappear within minutes to hours. Admitting that you are putting yourself in harm’s way is tough!

Looking back

I don't blame myself for the situation he was born into or my less than perfect parenting; it is a real shame, but there it is. My parenting was pretty standard but with our family dynamics and to his susceptible nervous system, it was disastrous. It took me a long time to recognise the link between cause and effect and then to manage my behaviour towards him, boost his self-confidence, find ways that he could have fun. I applied the principles of brain training in the hope that it would gradually weaken the aberrant nerve circuits and develop more healthy ones.

It was such a hard, unnecessarily long, extremely frustrating and fairly unsupported process to find the paths to recovery. The only support group for children with this condition was full of parents who talked about supplements and medications that occasionally provided a little symptom relief; no one was getting better; no one knew of recovery programmes outside of the NHS and I just found it depressing.

Looking forward

Now that I am retired, I’m on a mission to help other people find useful resources more easily. That and the fact that I love learning, teaching and helping.

A win: win situation!

Katy McGhie
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Adam Coloretti’s Story