The May 12th Awareness Day also represents a whole host of conditions known as CIND, or Chronic Immunological and Neurological Diseases, which also includes MCS (Multiple Chemical Sensitivity), Gulf War Syndrome and PVFS or Post Viral Fatigue Syndrome. I will stick to discussing ME and Fibro for this article, but much of the information can apply to these other conditions, as well as Post-Covid Syndrome.
Long Covid is now being spoken of alongside this group of conditions and many of us are hoping that this may draw much needed attention and investment to this often misunderstood and misrepresented category of illnesses, and perhaps bring hope for a successful treatment.
But mainly, we’d just like people to recognise these are proven, physical conditions and not something invented by those looking for attention, or ‘all in the mind’. Chronic Fatigue is the poster child for this attitude, with some doctors to this day thinking of it as something that can be ‘cured’ by progressive exercise programs or therapy, even though those theories have been debunked for some time.
May 12th was chosen as the day for CIND awareness as it was Florence Nightingale’s birthday, because not only is she often regarded as the patron saint of nursing, but she has been thought of as suffering from ME/CFS. She certainly suffered from chronic pain and fatigue on her return from Scutari, following an attack of what is now probably identified as Brucellosis. One of my favourite lesser known facts is that Florence Nightingale came back from the Crimean War and took to her bed, rarely leaving it again for the rest of her life. Yet she also remained engaged and busy, working to establish nursing as a profession and becoming highly regarded as a health advocate, a writer and a statistician*.
Chronic Fatigue Syndrome first came to public prominence in the 1980’s, with the first diagnostic criteria published in 1986. Newly recognised outbreaks both in the UK and US led to it being labelled as ‘yuppie flu’ in the press, and the lack of initial clarity about recognition, diagnosis and symptoms alongside a sudden upsurge in cases (common when something becomes publicised for the first time, as people first recognise symptoms in their own experience) meant the press and then the public were largely dismissive of this new ‘trend’. It didn’t help that some medical practitioners were also dismissive, as well. Sufferers not only had a debilitating range of symptoms to contend with – fatigue, muscle pain and weakness, disordered sleep, difficulty sitting upright and dizziness/weakness on standing, blurred vision, and cognitive impairment or ‘brain fog’ – they also had to suffer being dismissed as fantasists by those around them, including their doctors. It’s not hard to see why depression and anxiety are often comorbidities, and that counselling and CBT can be helpful in coping with this.
Therapy can help many people living with chronic illness, and does not mean a condition is psychosomatic, hysterical or ‘functional’. Therapy will help most things, to be honest, as the lengthy waiting lists for this underfunded service will attest. However ‘benign myalgic encephalomyelitis’ was first recognised in the 1950s, and described a condition that had been identified as ‘epidemic neuromyasthenia’ in the 1930s. By the late 1980s, it was agreed that the use of the word ‘benign’ was unhelpful, and ME was accepted as the agreed term for this set of specific, definable symptoms.
There was an initial surge of backing for Graded Exercise Therapy as a treatment for ME/CFS, as if reluctance to be active was an underlying cause that could be averted with increased physical activity. This has proven not only to be wrong, but actively harmful, and is no longer recommended as therapy. Unfortunately, no reliable new treatments have been found, with only rest and careful management being widely successful to any degree, if also frustrating for those affected. Being ill is never the same as being ‘lazy’ or ‘weak’, and ‘just getting on with things’ is not an option!
Fibromyalgia is often mentioned in the same breath as ME/CFS, and the two conditions share several key symptoms. However, Fibro differs in the consistent finding of pain and tenderness in key joints, and having pain as a predominant factor, as opposed to ME/CFS being defined primarily by fatigue.
Of course, individual symptom profiles can vary greatly within these criteria. Just to keep things exciting!
As it’s ME/CFS and Fibromyalgia awareness day on May 12th, ME/CFS awareness week, Fibromyalgia awareness month, plus coinciding with Mental Health Awareness week, here are ten things you can help sufferers by being aware of:
- Fatigue can be utterly debilitating. It’s not like feeling tired, or as if you’ve not slept well – although poor and non-restorative sleep are often symptoms too. Fatigue affects the energy you have available to do the smallest things, and any physical effort can be disproportionately exhausting. ‘Pushing on Through’ and ‘trying harder’ can require days of extra recovery. Fatigue of this nature is not improved by rest, it’s simply not worsened by it
- ‘Brain fog’ is a very common symptom, and one of the most frustrating. You can lose words mid-sentence, or lose track of what you’re saying mid-conversation. Your whole life can become “What did I go in to this room for?” multiplied tenfold. Inability to concentrate, focus or process simple mental tasks can be exhausting, if not impossible. Writing out something like this and researching my EMA can take me days, as my attention is so easily used up.
- Flare ups are common, and horrible things. You can feel yourself doing better, managing things in small increments. You get up, and even dressed for more than two days in a row. Some people can find that their symptoms can ease up enough to start to lead a ‘normal’ looking life. And then, out of nowhere, you will hit a flare up and lose everything. Pain, brain fog, a crashing weight of exhaustion weighing you down… And you’ve no way of knowing how long it will take to pass. Planning can be really hard, and you start to feel awful and very isolated if you have to keep cancelling events and meet ups. Have patience with your Fibro and ME friends. They really do want to see you, they genuinely just can’t right now.
- Associated conditions: rheumatoid illnesses often go hand in hand with Fibro, although this isn’t always the case. Seeing a rheumatologist to get a diagnosis can be really helpful, however. ME is often accompanied by Irritable Bowel Syndrome, POTS, and hEDS. The pattern of Asthma, Migraine, Non-seasonal Hayfever and skin sensitivities, Non-allergic Rhinitis or Non-specific allergies are also often found, alongside anxiety and depression.
- These are not mental health conditions, although they are often accompanied by them. Separate and focused treatment for these can improve your overall body health and resilience.
- These are not allergies, but paying attention to triggers in your environment can help avoid worsening symptoms. Some people find that ME/CFS and Fibro can increase their sensitivity to allergens, and foods you’ve enjoyed your whole life are suddenly giving you intolerance symptoms. Keeping a diary can help you spot triggers.
- Sensitivities that are increased are not just the obvious environmental ones. Pain sensitivity can be greatly increased, as can touch sensitivity generally. Noise and light sensitivity are often found too, as is increased sensitivity to heat and cold.
- Having a good day doesn’t mean you’re better, and some people even get months of symptom-free living with no flare ups. But they still maintain their diagnosis. There may be periods of remission, but there remains no reliable treatment or cure.
- Socialising takes effort too, even if you’re sitting down the whole time, or even in bed. Mental effort depleted your energy store, and something as simple as a half hour phone call can leave you debilitated for the rest of the day. Spoon Theory is a good way of understanding how resilience and energy need to be portioned out with care.
- Support and understanding are invaluable, and can prevent over-exertion and isolation. Reach out to people who have any sort of CIND condition, but send them a text message, with no deadline on replying. Send them another, too, in a few days. Let them know they still exist in the world and haven’t been forgotten.
You can wear a blue ribbon or anything else blue on May 12th for ME/CFS, or purple for Fibromyalgia. Or both. Why not combine them with green for Mental Health Awareness, too? Research into Post-covid Syndrome and Long Covid is giving people with other CIND disorders hope for improved treatments, because right now, successful treatment remains an unreached goal.
*Whilst often cited as inventing the pie chart, she actually only popularised its use, instead creating the arguably more accurate polar area diagram or Nightingale rose diagram, also known as a coxcomb chart. She is regarded as a great innovator and a leading light in the field of statistics.