Health & Wellbeing Uncategorized

Help Me Celebrate My 40th by Helping ME Patients

April 26, 2024
Black and white image of a young female laying in bed.

I turn 40 on 28th April 2024. And like many people with ME, my birthday celebrations look much smaller than you might expect for such a big milestone. I cannot throw a big party or go on a special holiday or take on a significant challenge. My health simply won’t allow it. But what I can do is use this opportunity to raise more awareness of the plight of ME patients.

I’m going to use this post to share a variety of ways in which you could help ME patients get the care they need. It includes numerous petitions you could sign, email templates to send to your MP, and my Blue Sunday fundraiser. All I ask is that you spend a little bit of time getting to know a little more about ME and helping us spread the word.

ME has robbed me of my 30s (the virus that triggered my ME hit me when I was 31). During that time I have been gaslit by many medical professionals, seen several ME patients die due to mistreatment and lack of care, and welcomed many more into our community thanks to the pandemic. Please don’t let another decade go by without any progress towards better outcomes for those of us with this cruel illness.

What is ME?

Let me start by giving you a brief overview of ME and why we need your help.

ME is short for Myalgic Encephalomyelitis. It is a long-term chronic health condition that causes a wide range of symptoms, including (but not limited to): extreme fatigue, cognitive dysfunction, coordination issues, headaches and migraines, muscle and nerve pain, gastrointestinal dysfunction, and orthostatic intolerance.

A lot of these symptoms are found in other conditions too, but the hallmark symptom of ME is post-exertional malaise (PEM), which is a significant increase in symptoms and decrease in function following even small amounts of exertion. Depending on the severity of the condition, exertion can be as little as eating a meal or having a shower.

It is often triggered following a viral infection, however this is not always the case. Unfortunately nobody really knows why some people develop ME, nor how to treat them. There has been very little research done in this area, and that which has been done has often focused on the idea that ME is a psychological rather than physiological condition. This prevailing belief has been peddled by psychiatrists, and led to the since widely discredited PACE Trial, which caused massive harm to ME patients.

It also contributed to ME being called Chronic Fatigue Syndrome (CFS) which many people (myself included) are officially diagnosed with instead of ME. This is why many of us use the term ME/CFS to include everyone. However the term CFS is highly misleading, as it focuses solely on a single symptom and gives people the impression that ME patients are simply “a little bit tired”. This could not be further from the truth.

Help save the lives of patients with severe ME

Because of this history of misrepresentation and lack of research, there are no official treatment options for ME patients. However, following a long battle by ME patients and charities, the NICE Guidelines were finally updated to remove Graded Exercise Therapy (GET) as a treatment protocol and recommend Cognitive Behavioural Therapy (CBT) only if the patient feels it would help, not as a cure. There is no cure for ME.

Sadly, there is no requirement for any medical professional to follow the NICE Guidelines. They also do not do justice to the medical needs of those who have severe or very severe ME. These patients often struggle to carry out activities that are required to survive – eg eating, drinking, going to the toilet etc. They need medical intervention – eg feeding tubes – to keep them alive. However these treatments are often withheld from them, by medical professionals who choose to believe in the psychosomatic approach to ME.

The ME Community has previously lost several people due to such medical negligence and cruelty. Channel 4 News recently covered the stories of both Merryn Crofts and Maeve Boothby-O’Neill who died due to lack of care for severe ME. It is well worth a watch to understand why this is so important.

Sadly this kind of mistreatment continues, and there are three women that I know of currently facing similar battles for care by the NHS. These are listed below – please check out their stories and signs their petitions to try and save them from the same fate as Merryn and Maeve.

Millie

Millie is an 18 year old with very severe ME. She is currently in the Royal Lancaster Infirmary, where she went on 30th January 2024 in the hope of having a feeding tube fitted so she could return home. Unfortunately staff refuse to believe in her ME, have treated her as if she has an eating disorder (which even if it was, their treatment was still inappropriate for that), ignored advice from ME experts, and have even limited how often her family can visit.

Please sign the petition to get Millie the care she needs and deserves, and bring her home here.

Carla

Carla is 23 and also has very severe ME. She is currently in the West Middlesex Hospital. Carla has previously been treated as an inpatient in other hospitals, and had been using an NG tube at home. She has been on a waiting list for a specialist unit for people with severe/very severe ME in Leeds since 2021. But in January 2024 her parents had to take her to West Middlesex hospital where she was initially under gastroenterology with referrals for other specialisms.

However a psychiatrist got involved, took over her care, and has been ignoring all the advice from ME experts and carrying out activities that are actively harmful to Carla. The hospital has been giving Carla medication without her or her parents’ consent. Carla has been having seizures, losing consciousness, and remaining tachycardic most of the time, yet neurologists and cardiologists have not been consulted.

If you are on X (formerly known as Twitter) you can help spread the word and put pressure on those in power by using the hashtag #SaveCarlasLife.

Karen

Karen is 37 and is another patient with very severe ME. Her care is under the East Sussex NHS Trust, who are refusing to provide IV nutrition (TPN) and IV hydration at home. Karen has been tube fed for 19 years at home, but an increase in her symptoms means that she is now only managing around 600 calories a day, sometimes less. This is not sustainable.

However despite ME experts saying that Karen needs a side room in the hospital and then TPN to be continued at home, the NHS Trust is treating this as a “preference” and also expecting her to travel 100 miles away to another hospital. This is not possible for someone as severely ill as Karen.

You can sign the petition to get Karen the care she actually needs here.

Create a proper treatment protocol for severe/very severe ME Patients

Millie, Carla, and Karen’s stories show how desperately we need a proper treatment protocol for severe and very severe ME patients.

There is currently an open letter to the Secretary of State for Health and Social Care to develop and implement such a protocol. It calls for the NHS to recognise the gap in provision, develop clear and standardised protocols, provide comprehensive training to NHS staff, allocate more resources for research into ME, and include ME patients in the development of protocols.

You can add you signature to the open letter here.

Ask your MP to attend the Westminster Debate on ME/CFS Research

Sajid Javid will be leading a Westminster Hall Debate on 1st May, between 4:30pm and 5:30pm. Action for ME has created a template letter you can send to your MP to ask them to attend this debate. You can download it and find all the information you need here.

If you are viewing this post after 1st May, please use their template to write to your MP asking them to support Action for ME’s Manifesto in the run up to the next General Election. You can find all the details for that here.

Donate to an ME Charity

If you have a little money spare, please consider donating some to one of the ME charities that are working hard to change the lives of ME patients. You could Google ME charities and find one which you want to support, or you could take part in a Blue Sunday event on 12th May.

I have hosted an online zoom tea party for Blue Sunday the past couple of years, but unfortunately I am too ill to do so again this year. However I shall be wearing blue, enjoying tea and cake, donating, and joining in online on the day, and I invite you to do so as well. I have decided to support Action for ME again this year, as I have used their resources a lot, including when writing a formal complaint about my own treatment as an outpatient this year. So I’d appreciate you donating the cost of a tea/coffee and cake to my fundraising page if you can.

Please help us!

ME patients are some of the sickest people. The quality of life of ME patients has found to be one of the lowest when compared with other chronic conditions, and far lower than the general population. And yet we are still seen as fakers and malingerers, both by the general public and health care professionals. We fight hard to be taken seriously, get the care we deserve, and push for more research, but we have incredibly limited energy. We need your help!

It only takes a few minutes to read through some of the information provided in this post and click on a few links to add your name in support. So please, do me a favour for my birthday, and help us.


If you have enjoyed this post and found it useful, here are some ways you can support A Spiral Dance.

  1. Buy Me A Coffee – this is an easy way to support me financially, to help keep the blog going and cover my bills.
  2. Follow me on social media – I’m on FacebookThreadsBluesky, and Instagram.
  3. Share this post with others.
  4. Read and share some of my other posts. I have several posts related to health and wellbeing.

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