Hello and welcome to February’s newsletter. Hope you have had the best month possible.
Nominations for Merryn’s Smile Day 2022 are now open. You can nominate a Severe ME sufferer for a special Smile by completing the nomination form. Repeat nominations are considered.
Merryn’s Smile Day takes place on the 13th May and is an annual event when we send Smiles to those affected by Severe ME in Merryn’s memory. Merryn Crofts sadly passed away from Severe ME in 2017 just days after her 21st birthday. I was lucky enough to be her friend and thanks to her family’s blessing Merryn’s Smile Day was created in 2019 to celebrate her birthday. Smile For ME want to remember Merryn by sending a Smile in her name to those suffering with Severe ME. Merryn loved sending little gifts and also loved it when happy post arrived for her so we are glad to be able to do this in her memory.
To read more about Merryn and Merryn’s Smile Day click here.
15 Smiles were sent to both ME sufferers and carers of all ages this month. The items included in our Smiles change all the time as we personalise them to each person’s likes and interests. Some of the items included this month were art supplies, craft sets, games, jigsaws, books, mugs, gloves, socks, cuddly toys, fidget toys, crisps, sweets and chocolates.
We love reading your messages and seeing your pictures thank you for kindly letting us know your Smile arrived. Thank you to the person who sent us a lovely handmade thank you card, so glad we were able to make you smile.
Smile of the month
What’s made you smile this month? Each month we ask this question on social media and we love hearing the responses. We hope by sharing some of your smiles it can help others to find a smile too.
Share a story is a segment in our monthly newsletters where we share a story from someone affected by ME to help raise awareness and remind others they are not alone. This month’s share a story is by Helen Ashby, Thank you Helen for sharing your and your daughter’s story.
When you know your child is physically ill but doctors say it’s all in her head.
By Helen Ashby
They say no one does investigation as thoroughly or as tenaciously as a Mother of a sick child. I can now unfortunately confirm through personal experience this is the truth.
The truth faced by nearly everyone who presents with ME Symptoms is that most doctors don’t understand Myalgic Encephalomyelitis and so after their tests don’t give conclusive results will label the patient as having MUS or medically unexplained symptoms. This is the key that unlocks a Mental health route for what is actually a physical / biomedical illness,
When your child starts displaying symptoms of Myalgic Encephalomyelitis the journey the medical profession take you on is into a hell on earth. You and your child will be dismissed, disbelieved, accused of FII and fabricating the illness for attention. Munchausen’s will start being mentioned. You will be told you are an enabler and enjoying he additional caring role having a sick child is giving you.
I knew nothing about Myalgic Encephalomyelitis until my daughter was diagnosed with it. In the 1980’s I’d heard of Yuppy Flu and like others dismissed it as students being lazy, playing sick to get out of school. HOW WRONG WAS I!?!
Taking Elizabeth to our GP was the beginning of a long journey of fob offs, buck passing and dismissal of symptoms. It was a heart-breaking, soul-destroying journey that almost destroyed us both and has left Elizabeth was a huge distrust of medical professionals.
I got to the point I thought my daughter was dying in front of me and no one would listen or help us. School were piling on pressure and judgements were all around us.
How did it all begin?
End of July and through August 2018: Noticed heart racing, getting breathless, often too tired to do usual things, frequently feeling ‘not quite right’.
7th September 2018– went to the gym and became physically exhausted and breathless with a high heart rate just peddling steady on a static bike. Went home and slept for 5 hours.
9th September 2018 – described falling asleep in class – zoning out, missing time and feeling confused over the last week. Throughout September 2018 – going to school but otherwise sleeping and feeling nauseous and dizzy with a band headache. Symptoms slowly increasing.
From the beginning of October 2018 – the tiredness was beginning to become exhaustion and overwhelming fatigue and sleep was 17-20 hours a day 3 or 4 days a week – school attendance began to drop, social life stopped totally.
17th October 2018 -my daughter had slept 22 hours and was really nauseous and dizzy and very pale will yellow panda eyes and she hurt everywhere. we went to the GP and he said it was probably a virus but ordered basic blood tests.
21st October 2018 – again she slept over 20 hours and said it felt like she had had a general anaesthetic and was unable to wake, or talk or move her body. Something in the back of my mind wondered about diabetes. I had a blood sugar testing machine from my mother having type 2 diabetes. I expected her blood sugar to be high so was very shocked to see a 2.8 reading. I made her eat a chocolate bar and drink a full fat coke. Still her blood sugar was 2.9 and then 3. I called NHS direct for advice and they sent a paramedic. They were able to bring her blood sugar up to 4.2 with glucose and asked if she had been tested for Addison’s Disease. They suggested we got an appointment with the GP for tomorrow as urgent and if her blood sugars dropped again to call them back.
22nd October 2018 – we went back to the GP who said he was at a loss as to why her blood sugars had dropped, maybe she wasn’t eating enough. He sent her for the blood tests I requested, cortisol, sodium and potassium. I spent the day researching Adrenal Insufficiency, symptoms, diagnosis, treatment, and the lack of understanding and knowledge within the medical profession.
23rd October 2018 – cortisol came back as 216 at 8.40am, My GP was happy with this and said it was within range and again everything pointed to her having a virus of some sort or maybe this was a flare up of her anxiety or depression. By now my daughter was barely able to function and was basically bed bound or sofa bound. She was rarely making it into school and we kept being told it was just a virus or it was her anxiety coming back. I knew from my own research that her cortisol was low, it should be over 500 at that time in the morning. I joined a support group on FB and learned quickly how awful everyone’s experiences had been trying to get diagnosed with any adrenal conditions.- 3-5 years in most cases and finally getting a diagnosis post life threatening crisis! We were given an appointment for a paediatrician at our local hospital for 7th January 2019 – 3 months away! I searched the internet for the top man in his field and emailed hi and asked if he would see my daughter. I bombarded him with evidence and photos of how poorly she looked. I was convinced she was dying and no one was helping. He agreed to accept a referral and my GP arranged it.
8th November 2018 – Following the advice of the specialist I asked my GP for an SST blood test and an ACTH blood test and also one to check for pituitary function.
12th November 2018 – the SST was arranged. This is a Short Synthacyn Test. Cortisol is measured, ACTH substitute injected and cortisol re tested at 30 and 40 minutes. If your adrenal glands are not working and you have Adrenal Insufficiency the cortisol won’t raise much of at all. However she passed the test well. her starting number was still low at 285 but it raised to 617 then 671. During the blood tests my daughter was observed to be in pain and look quite poorly so was advised to be seen by Urgent Care Dr. She was referred to children’s Ward at local Hospital – with no physical examination or detailed history taking, a doctor decided no medical reason for any of her symptoms, must be silent reflux and a hidden eating disorder and to go back to CAMHS. Told to be reassured there was NO MEDICAL reason for her symptoms and that because she reacted well to the SST test there was definitely no adrenal Insufficiency. When I asked about it being a pituitary issue such as isolated ACTH deficiency I was told nothing in her blood work lead to that conclusion.
13th November 2018 – given Iron supplements from the GP at my request because ferritin was 24 (range of 13-150)
15th November 2018 – told by GP ACTH was 8 – with low cortisol you’d expect it to be 30+ as it tried to encourage the adrenals to produce more cortisol. No one seemed to have much of a clue as to what is and isn’t in range and what out of range could mean.
19th November 2018 – tried to go back to school. After 15 minutes I was called to fetch her as she was confused, dizzy, feeling feint and nauseous and didn’t know where she was. She came home and slept 23 hours straight.
22nd November 2018 – GP provided the school with a letter saying she was not well enough to attend school. they charged us £25 for this letter. Funny how a sick note for work is free!
29th November 2018 – diarrhoea x2 with terrible belly pains and back flank pain. Crying with the pain.
4th December 2018 – started vomiting, ambulance called, seen in A&E decided it must be a stomach bug and could not account for any other symptoms discharged after 5 and half hours. Sodium and Potassium were in range, BP higher than normal and heart rate raised, no temperature. At this point I am convinced as is everyone else on the Adrenal Insufficiency website that my daughter has Secondary Adrenal Insufficiency caused by a problem with her Pituitary Gland.
7th December 2018– I came across research into Fluoxetine in Rats and was concerned it was this medication making My daughter ill. I know this is totally random but my daughter is on 40mg a day of fluoxetine for anxiety, depression and trichotillomania. I can’t find much in the way of research in humans – other than people with high levels of cortisol are unlikely to respond favourably to fluoxetine.
8th December 2018 – I spoke to her GP and a CCG pharmacist both agreed with my request to halve her dosage immediately then speak to her psychiatrist Monday. Obviously the option to just cease taking it isn’t safe. When these symptoms first became chronic I asked about the medication and was reassured the side effects were mostly gastro and it was dismissed as a cause by GP and Psychiatrist. GP yesterday said a research paper on rats was hardly conclusive and she had never heard of fluoxetine affecting cortisol or ACTH. The pharmacist said half life of medication is 3- 4 days and so if halving it is going to have a positive affect we will see it in 9-12 days.
10th December 2018 – Spoke to her psychiatrist and it was a very strange conversation, he had no idea Fluoxetine can affect cortisol levels or possibly cause the symptoms my daughter is having. He suggested just stopping the medication – I expressed concern about the effects of sudden withdrawal and he agreed I was probably right to be worried. He did say that he had checked and there have only ever been 108 reported Yellow Card alerts for Endocrinology related side effects to Fluoxetine so it was most unlikely it was anything to do with the medication. he did however agree with me that most people with similar symptoms wouldn’t have looked at cortisol levels and so would not have realised the endocrine system had been affected.
11th December 2018 – Email from Endocrinology Specialist in London – The problems that your daughter has could be explained by side effects of fluoxetine and this needs to be considered. It certainly would not be wise to stop fluoxetine suddenly it would need to be weaned down.
19th December 2018 – took her last Fluoxetine tablet.
21st December 2018 – saw paediatric Endocrinologist in London (We live in the West Midlands) she was well rested the day before, slept on the train on the way down and sat in the hospital café for 2 hours as we were early. So presented as quite well. However on the way home she took ill in the train station, becoming dizzy, and breathless and in pain with upper abdominal and kidney area pain and was extremely nauseous. We arrived home at 11:25pm and she went straight to bed and slept until 16:50 the next day.
When my daughter suddenly became physically ill doctors dismissed her symptoms because she already had a diagnosis of social anxiety and generalised depression. No medical professional was willing to look past her previous mental health condition. We were told she had a hidden eating disorder, (she didn’t she was just lacking the energy to eat and had no appetite, and was sleeping up to 20 hours a day).
It took us another 12 months to get a diagnosis of ME through seeing the amazing paediatrician Dr Nigel Speight, privately.
To read more go to my blog: https://mydaughterandme.uk
Thank you to everyone who has supported us this month. We are so grateful for the kindness and generosity which enables us to continue sending Smiles to those affected by ME. It means such a lot thank you.
Thank you and Happy Birthday to those who chose to support us with their Facebook Birthday fundraiser. Thank you Joanne, Grace, Linda and Marie, hope you all had special Birthdays.
A special thank you to Wendy who completed her Chilly Challenge for ME of swimming 15 chilly swims by the end of February. Well done for braving the cold and tough conditions to raise an amazing £485 for us as well as money for Invest In ME Research. Thank you for all you have done for those affected by ME. We really appreciate your kind support enabling us to continuing sending Smiles.
A big thank you to our local shop Finishing Touches. They kindly support us with generous discounts, some free items and have also raised an amazing amount of money from our donation boxes. If you are local to Lee-on-the-Solent check out Finishing Touches. Thank you Dave and Sharon for all you have done for us.