This is the story of one of our patients who wrote about her experience which was included in Dr Perrin’s 2020 book.

Penny has gone into a lot of detail where a lot will resonate with people suffering similarly.

In 2009, life took a turn I could never have envisaged.

Prior to this, I had enjoyed a very active and interesting life flying around the world working for British Airways as Cabin Crew and then later, on the ground at Manchester which was more conducive to family life. My Husband and I were doing up a house together, we enjoyed long walks in the countryside and I cycled whenever I got the chance. I enjoyed meeting friends, going out for dinner and learning to play the piano. Busy busy, just like any other family.

In 2004, when my youngest daughter started school, I retrained as a teaching assistant and took a job in a small Primary school in Wilmslow, Cheshire. I had truly found my vocation, working with children who had special educational needs. Being in the “viral pool” as we affectionately called it had its challenges, lots of runny noses etc. I think you get the picture! I built up resistance like the other staff. After all, I had worked in “tin tubes” with recycled air and in an air conditioned airport!

In December, 2009, I caught a nasty virus and was in bed for two weeks. Following this, I had several infections mainly chest, sinusitis and bugs a plenty. This pattern continued on and off but in December, 2012, I had the Flu and spent 10 days on sick leave. With the usual guilt in tow, I went back to work too early. I felt very weak and as a result was back in bed again within 2 weeks of my return. However, this time things spiralled. By January, 2013, I was in hospital with suspected viral meningitis.

From this point onwards, my pre 2009 good health never returned. It was Easter before I managed to go back to work on my original hours but It was a massive struggle and took every ounce of energy I could muster just to get there. The fatigue was crippling. I had gone from a robust individual to one who now picked up every illness that was circulating.

When I fell asleep in a lesson (the teacher wasn’t that boring!) I knew I couldn’t carry on like this. My GP was very compassionate but had not seen anyone with prolonged and such debilitating symptoms of fatigue, muscle pain/ twitching, sleep disturbance, nausea, racing heart, joint pain, memory problems, brain fog etc. as I was now presenting. With such an endless list of ailments, I started to sound like a mad woman! Who would even believe me? When I did sleep, I woke up still feeling drained. I was continually off work when my legs refused to “work” and I was unable to get out of bed. During these episodes, my husband had to take over which included him carrying me to the bathroom. I was so weak, I was unable to reach and lift up a glass of water. The most terrifying part was the not knowing if or when each “episode“ would end. That really played with my head. “Will this be the one that leaves me bedridden for years? “I used to think. This, of course did not help my cause as it resulted in even more stress, but I’m only human.

I am not going to lie. There were times when I felt that no life at all was a better option than the one I was trying to live. My emotional well being was taking a battering. I felt angry. After all, I had tried to be a kind and good person. I didn’t drink or smoke. Why had this happened to me? Looking back, I was mourning the loss of my old, active life and the freedom of choice it gave me. I would and will never , ever take that for granted again.

My first of many consultations was with a Haematologist who found nothing amiss. Next was a Rheumatologist who said I should take anti depressants and suggested it was psychological. Very helpful! To cut a very long story short, I saw an endocrinologist, had a brain scan to look at the pituitary gland, endless blood tests and finally ended up at Liverpool hospital for infectious disease where I was diagnosed with M.E./ CFS. It was now June 30th 2014. I was overwhelmed with relief. Bizarre isn’t it to be told you have a chronic illness and feel such an emotion? At last it had a name and I was, above all, believed. If I had a pound for every person who told me that “they got tired too” I would be very rich indeed. I could only try and describe to them that M.E/ CFS is like having the worst flu you have ever encountered coupled with the worst jet-lag.

From diagnosis, the search began for help. I tried lots of complementary therapies which helped short term with the pain but it didn’t last. I now think the benefit lay in it being relaxing and the calming effect on my central nervous system.

I reduced my working hours, tried CBT, mindful relaxation, took advice from a clinic in London, changed my diet and took supplements. I tried to do yoga and Pilates. The exercises proved to be too difficult as my muscles wouldn’t co-operate and it was too exhausting. Having seen a very knowledgeable endocrinologist at Salford Royal, I knuckled down to a strict pacing regime. I was still in a “boom and bust” cycle and it was extremely difficult to manage. When was too much too much? Sadly, I only found out when it was too late and I ended up in bed.

I limped on over the months trying to get the balance right, micro managing and assessing everything I did on a daily basis in order not to overdo it, but the episodes kept coming. If I picked up a cold it would be devastating. An ear infection saw me off work for several weeks. Some days, I was having difficulty verbally retrieving everyday vocabulary. Words often just didn’t look right. My memory was deteriorating. At one low point, I entered my classroom and realised I couldn’t remember the name of the teacher I had worked with for years. I had to excuse myself to the loo whilst I racked my brains. I thought I was going mad.

Feeling more and more isolated, I stopped trying to explain the illness to people and no longer read everything I could find on the internet. Other than my immediate family, I felt nobody understood how desperate I was starting to feel. By this point I no longer engaged socially. I felt I had literally exhausted every avenue and this was now going to be my life.

In the Spring of 2018, my husband came home from his usual golf match and told me about a conversation he had with a gentleman he had been paired up with. Both his wife and daughter had M.E. and had visited Dr Perrin in Prestwich. They had been successfully treated and were much improved. What did I have to lose?

I saw Dr Perrin in April 2018. He confirmed I had M.E. and gave me a score of 4.5. out of 10 - 10 being fit and well. He explained that people with M.E. Often think they are healthier than they really are. I had been quite proud of my now, well established pacing regime but Raymond said I was still in boom and bust and should give up work! I was upset. I felt I had sacrificed so much in life already. To give up my job completely would leave me with no sense of purpose whatsoever. We compromised and I cut my work back to 9hrs a week. Thank goodness my bosses were so understanding and supportive throughout.

I began treatment soon after with Colette at the Timperley practice as it was closer to get to. I had prepared myself for feeling worse before feeling better but it wasn’t too bad within that first 3 months; just a bit spotty, a bout of sinusitis and some weight gain from doing half of what I felt I could (as instructed).

At 12 weeks, I was reassessed and Collette gave me a new score of 6. I was delighted to say the least. I cried all the way back to the car where my husband was waiting to drive me home as usual. He looked worried until I told him they were tears of joy! I had not felt such a sense of hope in years.

At the end of October I took my first holiday in 9 years. Nigel and I went to a wedding In Maryland. He sorted everything out and made plan A, B and C depending on energy levels and covered every eventuality. Other than a couple of dips where I had to rest up, we had the most wonderful time. I now feel anything is possible.

I am 8 months into my treatment. Dr Perrin estimated it would be an 18 month process. I will be reviewed again in January 2019. I have had what I would describe as “mini episodes” where I definitely have identified stress to be the cause (bereavement). Overall, these haven’t been as prolonged as they used to be and I think I am more “accepting” of them. I think fighting this illness feeds it but that’s easier said than done when you are so debilitated.

When you feel you have tried everything to get better, but to no avail, it can be very daunting to commit to something new. That fear of disappointment is a hard one to overcome.

This is not a quick fix or magic bullet. It requires total commitment; sometimes when you least feel like it.

In my experience, the improvement is very gradual and almost natural. You aren’t aware you can do more physically until you look back and reflect. I am still pacing and being careful. I have the support of my husband, family and close friends without which I could not have survived this disease.

At the end of my treatment, If I can do 80% of what I used to prior to the onset of M.E. , I will be very happy indeed. If I can get back on a bicycle, I will be ecstatic. I’ll even settle for an electric one!

The future already looks brighter. I have even taken up the piano again. That’s only good news for me of course. I pity those around me having to listen! After all, this treatment can’t fix everything!

Update in August 2020: Following regular 12-week reviews through the summer of 2019 and a lot of hard work, I continued to gradually improve. By December 2019 I was 8/9 out of 10 and hadn’t had a flare up for four months. This is the point where I felt I was at a plateau but to be honest, I was happy to settle for that.

Sadly, life is a rollercoaster (cue song!) and in January 2020 I became extremely poorly. I had the worst episode since my diagnosis and couldn’t move out of bed for eight weeks and was very weak for several after that. I will never know if I had COVID-19 but Collette pointed out that my immune response may not have been typical of others with the disease ( I didn’t present with the cough etc). I was devastated both mentally and physically.

I have now returned to the practice and feel I am back to where I was when reviewed in December 2019. My energy levels are much improved and I have been able to do some gardening for the first time in years so who knows, I may be even stronger than I think!