Getting a diagnosis of Myalgic Encephalomyelitis often takes years. My own diagnosis took well over 2 years and I have spoken virtually to sufferers who waited decades. This is partly due to a lack of awareness and knowledge of M.E within the medical profession – some of whom doubt 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. Patients are tested for every other illness that incorporates our symptoms until nothing else is left. M.E is the rubbish at the bottom of the barrel.
Here are 7 key diagnostic indicators from the ME Association website:
The seven key symptoms for making a diagnosis of ME/CFS are:
- 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.
- Exercise-induced muscle fatigue: which may be accompanied by muscle pain.
- 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.
- 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.
- Sleep disturbance
- 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.
- 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 medical professionals concentrate on is fatigue, and unless you know about M.E, you might be unaware that other symptoms are related. Personally, I believe patients talk about fatigue to non-M.E affected friends and family because it is one symptom they would have a vague understanding of. Let’s be clear, our ‘fatigue’ is more like complete neuro-exhaustion that causes a cease in functioning. It’s not run-of-the-mill ‘feeling tired’.
For example, I have had Hypermobility Syndrome (HS) since my early teens, it has since been rebranded as hEDS (Hypermobile Ehler-Danlos Syndrome). 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. ME Foggy Dog would recommend that GPs and other medical professionals take a holistic view that encompasses the whole patient experience.
It is only now, since starting ME Foggy Dog 5 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. It is interesting that I was never asked if activity worsened my energy levels, even after my diagnosis of C.F.S. (I meet the 7 indicators of M.E so class myself as an M.E patient).
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. This is why we are raising as much research funding as we can so that one day, someone in a white lab coat will be able to devise a diagnostic test!
Another reason for it being hard to get a diagnosis is that only a very small number of medical students receive training on M.E at medical school, the majority 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.
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.
There is now training for GPs through the Royal College of General Practitioners but very few GPs are taking up the training. Foggy and I hope this training trend changes sooner rather than later.
Not only do M.E patients battle an illness that still requires much more 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 medical profession.
and Foggy (OBVIOUSLY)
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