Wednesday, 1 July 2020

‘As lockdown eases, those of us with chronic illnesses must not be left behind’


[Although not primarily about ME (it is mentioned), I thought that this is an interesting article from The Independent which makes some good points.]

The compassion we've learnt in lockdown must be carried through into the post-coronavirus world, says Helen Wilson-Beevers 

When Boris announced that pubs, cinemas, hair salons and hotels will reopen from the 4th July, there came collective chatter about reclaimed freedom. There is a palpable feeling holidays and nights out are once again within reach; a new normal is just around the corner. In England, too, shielding for the 2.2 million most vulnerable ends on 1 August.

Tentatively excited talk of lockdown ending joined social media posts about never taking simple daily joys for granted again. I absolutely can’t wait for that day to come too. But as someone who suffers from chronic health conditions, including Hashimoto’s disease and endometriosis, there’s also a degree of pragmatic detachment from this notion. Because for those affected by chronic illnesses, we’re acutely aware our lifelong experience of needing to occasionally shut ourselves away can’t ever be placed in a box marked This Too Shall Pass.

As offices disbanded in mid-March, working from home was suddenly the nation’s new normal. Something which chronic illness sufferers have continuously dreamt of; our unprecedented global circumstances proved that remote working is entirely feasible. For those whose sick days sabotaged careers, will more widespread flexible options finally materialise? Some people have noted that the intense fatigue worsened by their commute pre-pandemic has improved dramatically, they of course dread the return of the old order.

During this pandemic, we have seen a spotlight shone brightly on chronic illness like never before. That those with pre-existing health conditions and the elderly are most likely to be significantly affected by Covid-19, means we have come together to protect people who previously felt invisible. Covid-related messaging that no societal obligation is worth risking your health for was already part of the chronic illness tool kit, and this reality is now finally being seen.

This week in parliament, Conservative MP Sir David Amess asked the Leader of the House about help for endometriosis sufferers, especially those whose treatments and surgeries have been delayed or cancelled during the crisis. I have witnessed first-hand the incapacitating effects endometriosis causes and empathise hugely with people in urgent need of support. Managed out of several jobs during my twenties due to mounting sick days, nobody at work had heard of endometriosis. In one role, after collapsing, paramedics administered a morphine drip to me while I sat at my boss’s desk. The humiliation stays with me until this day.

In this instance, endometriosis was raised directly because of pandemic delays. However, the parliament focus on the disease is a welcome and not insignificant moment. Crushing exhaustion and agony are difficult enough to manage but lack of awareness is something which can be changed- and societal adaptions accordingly made.

The same goes for a major UK study into Myalgic Encephalomyelitis (ME) announced this week, investigating a widely misunderstood and devastating condition. Worryingly, one of the long-term effects of corona is chronic fatigue symptoms, leaving previously healthy people unable to manage simple daily tasks. ME is thought to be triggered by viral infections, yet the extent of its impact remains underreported, highlighting the crucial need for this study.

When quarantine began, comedian Miranda Hart spoke of the seemingly endless nature of this virus holding a mirror up to the emotions of those with chronic illness, tweeting: “As well as dealing with illness there is daily grief on missing out on the simplest things people take for granted. A café. A walk. A bus ride. Views.” As Miranda eloquently outlines, feeling heard makes a massive difference when someone is trapped under the heavy toll living with a chronic illness takes.

A few weeks pre-pandemic, I was in the depths of a debilitating thyroid disease flare and had to skip my good friend’s thirtieth. Lying in bed and aching from head to toe, overwhelming exasperation worsened an already demoralising time. While the familiar sadness about missing out on a fun evening around my favourite people stung, these brilliant friends cocooned me with understanding.

Yet on other occasions, when bailing on plans because my body won’t play ball, I’ve been met with countless unsympathetic comments. After being diagnosed with the auto immune condition Hashimoto’s disease, one person asked if I’d caused the illness myself by taking too many painkillers for endometriosis. Another time someone suggested I wasn’t thinking positively enough, and that daily affirmations or CBD oil could miraculously eradicate pain only improved by morphine. A fellow school mum once sarcastically asked if I “collect illnesses.”

Being pedalled quick fix snake oil ideas is extremely patronising. It invalidates the physical limitations those with chronic illness would do anything not to be held back by. A simple acceptance and understanding that where I’m at today is just part of my ongoing reality would be so much more welcome than an attempt to correct me and make me fit into society like a square peg in a round hole.

For so long, invasive investigations and random symptoms triggered shame and guilt. I’d be caught up in a vicious cycle, apologising about something which wasn’t my fault, and this consumed me. The constant fight to be heard – whether by medical professionals, bosses, or friends – is as crushing as dealing with pain and fatigue itself. No longer willing to be casually gaslit, I’ve learnt the immeasurable value in advocating for myself.

Living with chronic illness doesn’t mean you don’t desperately want to be an active participant. Often boundaries need to be set which won’t always be comprehended. If I had attempted the aforementioned-birthday night out, my already exhausted body wouldn’t have been able to get the kids to school or meet any deadlines that week.

Throughout the pandemic, coronavirus press coverage and Instagram feeds have touched on the daily struggles different health conditions cause. Those without chronic illnesses have been given a brief glimpse into restrictions dictated by uncontrollable health circumstances. And when lockdown does eventually become a distant memory, this overdue focus on our lifelong reality must not disappear either.

Tuesday, 23 June 2020

UK to launch world's largest genetic study into chronic fatigue syndrome


Research aims to shine a light on condition that is believed to affect 250,000 people in UK

The world’s largest genetic study into chronic fatigue syndrome is to be launched in the UK after receiving £3.2m of funding from the Medical Research Council and National Institute for Health Research.

The research aims to shine a light on the debilitating long-term condition, about which little is known, by collecting DNA samples from 20,000 people who have CFS, also known as myalgic encephalomyelitis (ME).

CFS is believed to affect about 250,000 people in the UK and has been estimated to cost the economy billions of pounds each year. Individuals experience exhaustion that is not helped by rest, with one in four so severely affected they are unable to leave the house and, frequently, unable to leave their bed. Other symptoms include, pain, mental fogginess, light and noise sensitivities, as well as trouble with memory and sleep. No effective treatment exists.

The DecodeME study is being led by a partnership of scientists and patients including Andy Devereux-Cooke. He said: “As someone living with ME/CFS, I’m well aware that the patient community has waited a long time for a study such as this one that has such a strong, genuine element of patient involvement. All of us involved with this research project hope that it can start to address the totally unwarranted stigma and lack of understanding that so many patients with ME/CFS face on a daily basis.”

The hope is the study will aid development of diagnostic tests and targeted treatments by pinpointing tiny differences in a person’s DNA that may affect their risk of developing CFS and reveal the underlying causes of the condition.

The samples will be compared with a similar number of non-CFS matched controls, which could be drawn from the UK Biobank.

Principal investigator Prof Chris Ponting from the human genetics unit at the University of Edinburgh said: “Our focus will be on DNA differences that increase a person’s risk of becoming ill with ME/CFS. We chose to study DNA because significant differences between people with, and without, ME/CFS must reflect a biological cause of the illness. It is our hope that this study will transform ME/CFS research by injecting much-needed robust evidence into the field.”

People with CFS who are aged 16 and over can volunteer to take part from home by signing up on the study website. When it begins, they will be mailed a collection kit and asked to send back a saliva sample, which will be compared with those from healthy controls.

Genome-wide association studies have previously helped uncover the biological roots of many other complex diseases, including type 2 diabetes and Alzheimer’s disease.

Tuesday, 16 June 2020

How Sweet The Name Of Jesus Sounds

This is one of my favourite hymns; you can hear it being sung by clicking here.

How sweet the name of Jesus sounds
In a believer's ear!
It soothes his sorrows, heals his wounds,
And drives away his fear.

It makes the wounded spirit whole,
And calms the troubled breast;
'Tis manna to the hungry soul,
And to the weary rest.

Dear Name! the Rock on which I build,
My Shield and Hiding place,
My neverfailing Treasury filled
With boundless stores of grace.

Jesus! my Shepherd, Brother, Friend,
My Prophet, Priest, and King,
My Lord, my Life, my Way, my End,
Accept the praise I bring.

Weak is the effort of my heart,
And cold my warmest thought;
But when I see Thee as Thou art,
I'll praise Thee as I ought.

Till then I would Thy love proclaim
With every fleeting breath;
And may the music of Thy Name
Refresh my soul in death!

(John Newton, 1725-1807)


Wednesday, 10 June 2020

European ME Coalition: Press release – Scientists call for more European research on ME/CFS

https://europeanmecoalition.com/press-release-scientists-call-for-more-european-research-on-me-cfs/

Brussels, 10 June 2020  More than one hundred scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and their loved ones.

ME/CFS is a long-term, debilitating illness that causes extreme exhaustion, poor concentration and memory, unrefreshing sleep, and many other symptoms. “The most characteristic feature is a worsening of symptoms following exertion,” says Evelien Van Den Brink, a Dutch patient who has suffered from ME/CFS for twenty-two years, since the age of fourteen. Because there is no cure for ME/CFS and its pathology remains poorly understood, Evelien submitted a petition to the European Parliament, asking for more scientific research into the condition. “More science is the only way forward,” Evelien says. “I’m almost completely bed-bound and I know fellow patients who are even worse off. We cannot let another generation suffer from this horrible illness.”

The petition has been signed fourteen thousand times and resulted in the first-ever resolution on ME/CFS in the European Parliament. “These patients have been ignored for far too long,” says Pascal Arimont, one of the members of Parliament who strongly supports the resolution. “There is currently no diagnostic test for ME/CFS because we know so little about the underlying pathology. In the US, Australia, and Canada, governments have invested substantial funds in ME/CFS research. Europe is running behind, so we urgently need to take action.” An estimated two million European citizens suffer from ME/CFS.

Today, the upcoming resolution received support from an open letter signed by 115 researchers and scientists worldwide. The letter stresses that ME/CFS “has long been a neglected area in medicine” despite its high societal burden and economic costs. “ME/CFS is not rare and it is highly debilitating,” says Professor Jonas Bergquist, who recently formed the ME/CFS Collaborative Research Center at Uppsala University, Sweden. “It often starts after a viral infection and we don’t really know what the mechanisms are for post-viral fatigue. Neuroinflammation and potentially autoimmune reactions may be parts of the explanation. More research is needed so that we get a better understanding of the disease.”

“A key priority is to develop a diagnostic test for ME/CFS to increase the accuracy of diagnosis,” Dr. Carmen Scheibenbogen, a Professor at Universitätsklinik Charité Berlin and one of the first signees of the letter, explains. “We hope to get a better understanding of the disease mechanism and eventually, an effective treatment. ME/CFS is one of the great challenges for modern medicine but I’m confident that a scientific breakthrough is possible.”

The open letter and full list of signees is available in the link below. For more info contact europeanmecoalition@gmail.com



Thursday, 4 June 2020

Physiotherapists taught three little words for the care of people with Post-Viral Fatigue Syndrome


Rest, Nutrition and Sleep should be the new normal when working with patients with Post Viral Fatigue Syndrome. The ‘Physios for ME’ group were asked for their views in the June edition of Frontline, journal of the Chartered Society of Physiotherapy.

As we enter the next phase of pandemic response, physiotherapy services are looking to support people recovering from Covid-19. One of the most prevalent problems is fatigue. Fatigue following a viral infection is common, but for some people the symptoms may persist for months and impact on their quality of life. We asked Physios for ME (Karen Leslie, Dr Michelle Bull, Natalie Hilliard and Dr Nicola Clague-Baker) for the low-down on post viral fatigue syndrome.

What is post viral fatigue syndrome (PVFS), and how do I recognise it? 

PVFS is a persistent state of ill health following a viral infection. Symptoms include fatigue, loss of energy, muscular aches and pains, intermittent flares of viral symptoms and an inability to return to previous levels of activity.  PVFS is not the same as being deconditioned. Ignoring or exacerbating the symptoms may worsen them.  

If there has been a sustained change to daily life and if rehabilitation isn’t progressing as you think it should, consider PVFS.

Where, say, a person may have returned to work but uses their weekends to recover, or is struggling even with basic daily tasks, it’s worth considering PVFS. 

With PVFS there is a possibility of development into Myalgic Encephalomyelitis (ME – often known as chronic fatigue syndrome or CFS). The link between severe viral infection and ME is clear. Previous outbreaks of SARS and Epstein Barr saw a 10 per cent rise in the number of patients diagnosed with ME1,2. ME affects approximately 250,000 people in the UK, more than multiple sclerosis and Parkinson’s disease combined. Around 25 per cent of patients are completely bedbound.  

If I suspect someone recovering from Covid-19 is developing PVFS, what should I do?

Adapt to provide pacing strategies to work within energy levels, rather than push beyond limits. And make sure you are clearly communicating your concerns with the multidisciplinary team for ongoing monitoring and support.  

The best approach is to ensure adequate: 

* rest 
* nutrition 
* sleep 

How do I know if a person with PVFS has developed ME? 

The hallmark feature of ME is post-exertional malaise (PEM), which is characterised by a set of symptoms including fever, muscle ache, headache, sensitivities, fatigue and dizziness. PEM is triggered by physical or cognitive exertion, which can be as simple as taking a shower or talking to a relative, and it can last days, weeks, or even months. PEM can manifest up to 24-48 hours after exertion, so it is not always apparent what activity was the trigger.  

Clinical signs to look for include: 

* post exertional malaise  
* persistent reported fatigue that substantially reduces activity levels 
* tiredness after sleep 
* muscle and/or joint pain 
* cognitive disturbances (memory, attention, information processing) 
* sensory disturbances (photophobia, sound sensitivity) 
* orthostatic intolerances (inability to tolerate anti-gravity positions) 
* ongoing flu-like symptoms, swollen lymph glands, sore throat. 

Research into the exercise physiological processes behind PEM is ongoing, so far finding 3:

* increased intracellular acidosis in exercising muscles and reduced post-exercise recovery from exercise
* abnormally low anaerobic threshold during maximal testing 
* reduced maximum heart rate, maximum oxygen consumption, cardiac output and blood pressure on maximal exertion. 

Such adverse physiological processes can be temporary, but for many they can result in a progression of the severity of their condition.  

What should physiotherapists do? 

The challenge for physiotherapists who are working to rehabilitate people recovering from Covid-19 is to identify those who start to display symptoms of ME so that they can adapt their approach to avoid triggering PEM and worsening the condition. 

Careful questioning and an awareness of their history may help to identify potential new ME patients. It may be several months before their symptoms are accurately identified. 

A standard physiotherapy programme of graded exercise, no matter how gentle it begins, always hinges on the principle of progression, and will therefore always end up at a level that triggers PEM. Up to 80 per cent of ME patients who have attempted some form of graded exercise have reported a deterioration in their condition4, and NICE Guidelines are currently under review after a campaign to remove graded exercise from any recommendations.

So physiotherapy that might work for one group of post Covid-19 patients may end up worsening another group who have gone on to develop ME. This is why we need to continually evaluate our treatments and monitor patients closely, as well as update our knowledge base around this condition and its management. 

More information

References: 

1. Hickie, I., Davenport, T., Wakefield, D., Vollmer-Conna, U., Cameron, B., Vernon, S. D., Lloyd, A. (2006). Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ, 333(7568), 575. 




The CSP’s Professional Advice Service gives advice and support to members on complex and specialist enquiries about physiotherapy practice, including professional practice issues, standards, values and behaviours, international working, service design and commissioning, and policy in practice. 

* Frontline is the Journal of the Chartered Society of Physiotherapists – the professional, educational and trade union body for the UK’s 59,000 chartered physiotherapists, physiotherapy students and associates.

Monday, 1 June 2020

New Video: Severe ME and Very Severe ME

This video [which is just under 15 minutes long] is from the project 'Dialogues from a Neglected Illness’ - supported by a Wellcome Public Engagement Fund Award 2018 / 21. The project addresses different aspects of ME/CFS and includes interviews and input from doctors, researchers, patients, carers and advocates.

Produced by Natalie Boulton, with cameraman and editor Josh Biggs.

Please go to the project website dialogues-mecfs.co.uk for more information and to see other videos

To watch the video on Severe ME and Very Severe ME, please go to


Friday, 22 May 2020

He led them forth by the right way

http://bible.christiansunite.com/Morning_and_Evening/chme0522.shtml

C H Spurgeon's Morning Devotional for 22nd May

"He led them forth by the right way."

Psalm 107:7

Changeful experience often leads the anxious believer to enquire "Why is it thus with me?" I looked for light, but lo, darkness came; for peace, but behold trouble. I said in my heart, my mountain standeth firm, I shall never be moved. Lord, thou dost hide Thy face, and I am troubled. It was but yesterday that I could read my title clear; to-day my evidences are bedimmed, and my hopes are clouded. Yesterday I could climb to Pisgah's top, and view the landscape o'er, and rejoice with confidence in my future inheritance; to-day, my spirit has no hopes, but many fears; no joys, but much distress. Is this part of God's plan with me? Can this be the way in which God would bring me to heaven? Yes, it is even so. The eclipse of your faith, the darkness of your mind, the fainting of your hope, all these things are but parts of God's method of making you ripe for the great inheritance upon which you shall soon enter. These trials are for the testing and strengthening of your faith-they are waves that wash you further upon the rock-they are winds which waft your ship the more swiftly towards the desired haven. According to David's words, so it might be said of you, "so He bringeth them to their desired haven." By honour and dishonour, by evil report and by good report, by plenty and by poverty, by joy and by distress, by persecution and by peace, by all these things is the life of your souls maintained, and by each of these are you helped on your way. Oh, think not, believer, that your sorrows are out of God's plan; they are necessary parts of it. "We must, through much tribulation, enter the kingdom." Learn, then, even to "count it all joy when ye fall into divers temptations."

"O let my trembling soul be still,
And wait Thy wise, Thy holy will!
I cannot, Lord, Thy purpose see,
Yet all is well since ruled by Thee."