M.E. Awareness Week, Part III: A Battle for Recognition in Healthcare

Image by ME Association; www.meassociation.org.uk

Star and Crescent are proud to be working with Portsmouth fundraising campaign M.E. Foggy Dog and its founder Sally Callow on a week of articles devoted to raising awareness of Myalgic Encephalomyelitis (M.E.). In part III of this week’s 6-part series, Sally explores the struggle for a diagnosis, and the still too frequent experience of healthcare professionals who lack awareness, or even fail to acknowledge the existence, of M.E.

Getting a diagnosis for M.E often takes years of tests and doctor’s appointments. My own diagnosis took well over 2 years and I have spoken to sufferers who waited decades. This is partly because of a lack of awareness and knowledge of M.E in the medical profession – even doubt by some professionals that M.E is a ‘real’ illness.

It’s also partly because there is no definitive test for the illness. Our diagnosis is symptoms-based. We are tested for every other illness that incorporates our symptoms until nothing else is left.

Here are 7 key diagnostic indicators from the ME Association website:

The seven key symptoms for making a diagnosis of ME/CFS are:

  1. Post-exertional malaise or symptom exacerbation: the key diagnostic feature of ME/CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate.
  2. Exercise-induced muscle fatigue: which may be accompanied by muscle pain.
  3. Cognitive dysfunction: Problems with short-term memory and working memory (the ability to deal with tasks quickly), concentration and attention span issues, and word-finding abilities.
  4. Pain: Can be persistent and difficult to control. Pain can be muscular, rheumatic or neuropathic. However, a significant minority of patients experience little or no pain.
  5. Sleep disturbance
  6. On-going, flu-like malaise: A general feeling of ‘being unwell’ that is accompanied by sore throat, tender lymph glands and problems with temperature control.
  7. Autonomic symptoms: including orthostatic intolerance (an inability to sustain upright activity). Autonomic symptoms are very common in ME/CFS .

Unfortunately, the one symptom that patients and healthcare professionals concentrate on is fatigue, and unless you know about M.E, you (like many healthcare professionals) might be unaware that other symptoms are related.

For example, I have had Hypermobility Syndrome (HS) since my early teens. M.E researchers now know it is common for M.E sufferers to also have HS, but at no point during my lengthy diagnosis period did any doctor link the two. Instead, each symptom was treated individually.

It is only now, since starting ME Foggy Dog nearly 4 years ago, that I understand many of my individual symptoms fall under the umbrella of M.E.  My fatigue, migraines, IBS, low blood pressure, vertigo, muscle fatigue and insomnia were all treated individually.

As an M.E advocate, I’ve also come to learn that I suffer from Orthostatic Intolerance (OI). Before becoming more involved in M.E awareness-raising, I didn’t know that was an illness! I once heard OI described as your head feeling like a bowling ball, on a neck that feels like a toothpick, and a spine like wet spaghetti. It is very difficult to keep upright. It affects me when I am standing but also when I am sat down. I feel as if gravity is working against me and I have an overwhelming need to lie down.

So, as you can imagine, it is incredibly difficult to diagnose M.E because not every patient has the same experience. Levels of severity are different, symptoms are different; some have pain whilst others don’t.

Another reason it is hard to get a diagnosis is that medical professionals receive no training on M.E at medical school, they learn on the job. This is the case for many other illnesses, but in the case of M.E it is further compounded by the fact that the information available to medical students and practitioners is not fit for purpose.

The NHS Choices website, for example, contains many of the misconceptions about the illness.  More than 250,000 people in the UK are diagnosed with M.E. There are many thousands more stuck in the diagnostic process because of the inaccurate or misguided information on official NHS websites like this one.

In my experience, and that of many ME Foggy Dog followers, GPs are often unwilling to acknowledge M.E as a serious illness, making many reluctant to research the illness further. Some of these experiences are captured over at the M.E Association website in the comments from M.E sufferers, like this one from Jane, left on the site in January 2017:

I was diagnosed with CFS three years ago. I was referred to the Ashlie Ainslie clinic in Edinburgh…The treatment offered was basic, CBT techniques and a cd of calming music. This negative experience affected me profoundly and I have not sought any further treatment since.

To combat this, the M.E Association (which I fundraise for through ME Foggy Dog) has created a guide: ME/CFS/PVFS An Exploration of Key Clinical Issues (2017), which is now available free of charge for medical professionals in the UK.

Yet I’ve been told by several fellow M.E sufferers that even when handed the booklet, GPs refuse to read it. I find it almost impossible to understand why GPs would take no interest in better understanding M.E and those affected by it. I also want to make clear that there are GPs that offer excellent care to their M.E affected patients.

On 20th February, a Parliamentary debate was held on the ‘PACE Trial: People With ME’. Gosport MP and Minister for Care, Caroline Dinenage, responded to a series of questions from SNP MP Carol Monaghan about the ‘lack of understanding [M.E sufferers face] when seeking help’. In one response, Caroline Dinenage acknowledged the need for better education about M.E for GPs:

It is also true that the difficulties in diagnosis mean that patients with CFS/ME often experience delays in getting the treatment and support that they need. In recognising the need for GPs to be aware of the condition, the Royal College of General Practitioners identified CFS/ME as a key area of technical knowledge that GPs should have as part of their qualifying exams.

I hope this training is available sooner rather than later.

Not only do M.E sufferers battle an illness that still requires extensive research to understand, but we also have to deal with ill treatment: the all too frequent disbelief and lack of empathy from those in the healthcare profession.

You can get involved in this week’s awareness raising by coming along or helping to spread the word about two exciting events:

Friday 11th May 2018, 12.30 – 2pm, M.E Awareness Week – Go Blue!

Join Sally at the Frank Sorrell Centre for a coffee and a chat, and find out more about ME Foggy Dog and M.E/CFS. This is a family friendly event with activities for the whole family to take part in. ALL WELCOME!

Find out more here.

Saturday 12th May 2018, 12.30 – 2pm, International M.E Awareness Day – Go Blue!

Join Sally for a coffee morning in the Lily & Lime cafe in Central Library. Wear blue to help spread the message!

This is a family friendly event with activities for the whole family. Take part in our M.E quiz to be in with a chance of winning a pack of Quirk, a family fun card game and 2x best seller in the UK, it is nominated for 4 awards in gaming this year and is showcasing at the UK Games Expo in Birmingham and International Spieltage in Essen, Germany 2018. The prize is one of the first 1000 to be printed.

Find out more here.

And of course, read the rest of  Sally’s articles from this week here on S&C.

Head over to the ME Foggy Dog website to follow Foggy’s travels on his blog, donate and shop to raise money for the ME Association, and of course, follow ME Foggy Dog on social media: on Twitter, Facebook, YouTube and Instagram.

Main image courtesy of ME Association.