Saturday, 21 April 2018

Forward ME – Meeting with Dr Diane O’Leary about possible WHO coding changes

ME Association - Forward ME – Meeting with Dr Diane O’Leary about possible WHO coding changes - 21 April 2018

Forward ME

Notes of meeting held on Wednesday 28 March 2018

1. Apologies

Hannah Clifton ME Trust, Dr Paul Worthley ME Trust, Dr Gareth Tuckwell ME Trust, Bill and Janice Kent ReMEmber, Cath Ross 25% ME Group, Tony Crouch 25% ME Group, Christine and Tanya Harrison BRAME.

2. Present

Carol Monaghan MP, Dr William Weir, Dr Charles Shepherd ME Association, Jane Colby Tymes Trust, Sarah Reed #MEAction, Clare Ogden Action for ME, Countess of Mar (Chairman).

3. Science Media Centre

There was discussion about the Science Media Centre Factsheet “CFS/ME – The illness and the controversy” which was published on the SMC website on 20 March 2018. It was agreed that the Chairman would write to the Chief Executive and to the Chair of the trustees of the SMC to object to the inaccuracies and distortions and to request that the factsheet be retracted.

4. Dr Diane O’Leary

Dr O’Leary presented a paper on the move within the WHO International Classification of Disease team working on the ICD11 revision to reclassify a number of disorders previously grouped as MUS (medically unexplained symptoms) into one large symptom cluster with criteria that would be used in primary care and which would ensure that all patients who qualified would be offered mental health care rather than medical care. None of these criteria were evidence-based.

(See “Bodily Stress Syndrome” info sheet).

The group discussed Dr O’Leary’s concerns and various actions were suggested. These included:
  • Publication of the info sheet on Forward-ME website with members either linking to it or publishing it themselves. It was agreed that this would not be done until after 12 April 2018 as there were to be discussions with the WHO.

(N.B. Subsequently, it was decided between the Chairman and Dr O’Leary to publish the info sheet as it was important that the information be disseminated as soon as possible).
  • The Royal Colleges of Physicians and of General practitioners might not be aware of the effects that this reclassification would have on their members’ diagnosis of patients’ symptoms so the Chairman agreed to write to them.

  • Other organisations representing people with MUS should be alerted so that, if they wish, they can make representations to the WHO. The Chairman would find as many of them as possible.

It was agreed that there should be another meeting soon so that further activities could be organised.

Note: A further communication about the possible changes to WHO coding has subsequently been placed on the Forward ME website dated 9 April 2018.

5. Any other business

Christine Harrison reported to the Chairmen that she was in regular contact with staff from Capita and that they were working on a new training programme for health professionals.

Charles Shepherd said that he was doing the same with Maximus.

Bill and Janice Kent asked that they be involved in any action that was to be taken with regard to BSS.

6. Date of next meeting

The next meeting would be held at 2.00 pm on Tuesday 1 May 2018.

Monday, 16 April 2018

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Systemic Exertion Intolerance Disease: Three Distinct Clinical Entities

Frank N.M. Twisk


Many researchers consider chronic fatigue syndrome (CFS) to be a synonym of Myalgic Encephalomyelitis (ME). However, the case criteria of ME and CFS define two distinct clinical entities. Although some patients will meet both case criteria, other patients can meet the diagnosis of ME and not fulfil the case criteria for CFS, while the diagnosis of CFS is largely insufficient to be qualified as a ME patient. ME is a neuromuscular disease with distinctive muscular symptoms, including prolonged muscle weakness after exertion, and neurological signs implicating cerebral dysfunction, including cognitive impairment and sensory symptoms. The only mandatory symptom of CFS is chronic fatigue. Chronic fatigue must be accompanied by at least four out of eight nonspecific symptoms: substantial impairment in short-term memory or concentration, a sore throat, tender lymph nodes, muscle pain, multijoint pain, a new type of headaches, unrefreshing sleep, and postexertional “malaise” lasting more than 24 h. So, regardless whether the name ME is appropriate or not, ME is not synonymous to CFS. That is not a matter of opinion, but a matter of definition. Due to the definitions of ME and CFS, “ME/CFS” does not exist and cannot be replaced by a new clinical entity (SEID: Systemic Exertion Intolerance Disease), as recently suggested. View Full-Text

Friday, 13 April 2018

I Am Stuck In The Prison That Is ME

Ellie Bunce

I had hopes of being an Olympian - now I’m bed-bound with an illness some people think doesn’t exist. 

ME, two simple letters that can rip apart everything you worked for and everything you ever dreamt of.

Myalgic encephalomyelitis is a soul destroying disease that leaves so many bedridden without anyone knowing.

I’ve had ME for two years now after coming down with glandular fever in Easter 2016. At the time I was 19, a student athlete - in my second year of university - with hopes of rowing internationally. I was fit, active, I ate well, I exercised. I was happy and positive and yet one day I woke feeling as if I was dying. It was like my whole body ached, in a way I’d never felt before - I felt drained of everything I had. I knew instantly something was wrong.

After calling 111 it was thought I had meningitis and an ambulance took me to A&E where various tests showed I had nothing wrong and was sent home with a suspected viral infection. However, that evening my tonsils went bright white and swelled so much I couldn’t breathe or swallow. Again I called 111 and was sent to an out of hours doctor where I was told I had tonsillitis.

A course of antibiotics cleared up my throat but I never felt the same again. Training was hard, I was always in pain and out of breath. After a week my tonsils flared up again. This time I was told in was glandular fever and to rest.

Months and months went past and I never got better.

Eventually it was thought I had chronic fatigue syndrome (ME). Since then I’ve spiralled downhill, getting more poorly everyday. From what I know, ME is an inflammation in my brain and nervous system which has left me in excruciating chronic pain, poor cognitive function, a weakened immune system and chronically fatigued.

Day to day every inch of my body is in pain, I struggle to read and concentrate, I’m sick, I’m too tired to move, bright lights hurt my eyes, loud noises hurt my head. I spend upwards of 20 hours in bed a day in order not to “crash”. In my crashes, I scream in pain, unable to talk, or move. My whole body shakes, my eyes roll. It’s like my whole body is screaming at me to stop.

Some days, when I feel a little better for an hour or two, I’ll see a friend. I look well. Nothing looks wrong with me. They don’t see me lying in bed screaming in pain. No one understands what truly goes on behind closed doors. People will ask me if I feel a bit tired. Or stare at me if I stand up after using a wheelchair. I’m questioned if it’s my mental health. If I’m lazy.

Have you ever laid in bed and felt so ill that you truly thought you were going to die?

ME is a hugely misunderstood and unheard of illness.

For years it was misdiagnosed and not believed. I’ve struggled with various doctors not understanding the condition and suggesting treatment, which in fact, made me worse. The first ‘specialist’ I saw suggested it was my personality.

He said, I should make more effort to wake up at 9am get showered, dressed and then go on a long walk. This was my ‘treatment plan’. However, the more I pushed myself to get out of bed, the more ill I got.

Imagine how you would feel if haven’t slept in three days, you caught the flu, had the worst hangover of your life - and you had to run a marathon feeling like this. This is how I feel everyday.

Having ME can leave me feeling invisible, unheard and misunderstood. It has lead to me developing various other conditions, such as depression, anxiety, eczema, migraines and tonsillitis. Because my immune system has been weakened I also regularly get viral infections on top of this.

My mind often wonders what I wish I could do if I wasn’t ill. I am stuck in the prison that is ME. When you are stripped of your hobbies, talents, energy and work then who do you become?

ME has made me become stronger mentally. I now find joy in the little things - a cuddle with my puppy, the blue sky, the sound of birds singing, the warm sun on my face.

I extremely grateful for all my family, relatives and the close friends who understand. I know it is hard for them to see me crumble into a shell of my former self. I live in the hope that one day doctors will find a treatment, one day there will be funding for more research, and one day I will be better.

The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.

MEA medical adviser Charles Shepherd said: “Several quality of life research studies have shown that the level of disability in ME can be just as great than many other serious medical conditions, including cancer and multiple sclerosis.

“While some some people with ME do improve over the course of time, it is only a small minority that return to full normal health.

“Despite being recognised by the World Health Organisation as a neurological disease, and a report from the Chief Medical Officer of Health calling for more research and a network of hospital based clinics, many doctors still don’t know how to diagnose and manage ME/CFS and lack or research means that we still don’t have any effective forms of treatment.

“This is a completely unacceptable situation for a disease that is twice as common as multiple sclerosis and where a new report has estimated that is costing the UK economy around £3.5 billion in lost taxes, healthcare and benefit costs.”

For more information on ME, or to donate towards research, visit the ME Association website: 

Friday, 6 April 2018

Forward-ME Group Letter to the Science Media Centre, April 2018

Forward-ME Group Letter

Forward-ME Group Chair, The Countess of Mar, has written on behalf of the members of the Group to the Chief Executive of the Science Media Centre asking for the SMC “to retract and replace your factsheet on CFS/ME, published on 21 March 2018”. The letter continues that the factsheet, entitled “CFS/ME – The illness and the controversy” “……. includes numerous inaccuracies and distortions; it denigrates patients and some doctors; it fails to reflect the numerous peer reviewed papers, published since the release of some of the raw data from the trial following legal action, which demonstrate serious defects in the PACE trial, and it fails to take into account the extensive research from the USA published since 2014. This will all have been available to you.”

The full text of the letter is as follows –

“Re: Science Media Centre Factsheet – CFS/ME – The illness and the controversy.

On behalf of Forward-ME I write to ask you to retract and replace your factsheet on CFS/ME, published on 21 March 2018, following the publication of a paper by Dr Carolyn Wilshire of the University of Wellington, New Zealand, which found that the findings of the Principal Investigators of the PACE trial were ‘not robust’ and showed ‘no long-term benefits’.

The factsheet includes numerous inaccuracies and distortions; it denigrates patients and some doctors; it fails to reflect the numerous peer reviewed papers, published since the release of some of the raw data from the trial following legal action, which demonstrate serious defects in the PACE trial, and it fails to take into account the extensive research from the USA published since 2014. This will all have been available to you.

The factsheet states: “CFS/ME is highly controversial with longstanding disagreements between the mainstream medical community and campaigners about its cause and treatment”. It also states that “amongst the mainstream medical research community, CFS/ME and NICE recommend management that is not especially controversial.”

These claims are patently inaccurate. The mainstream medical community in the USA concluded that the “campaigners” have actually been correct about the nature of the condition, stating that “ME/CFS is a serious, chronic, complex systemic disease” (Academy of Medicine), that it is not a primary psychological disease in aetiology” (National Institutes of Health). They state that guidance for managing ME/CFS should include a “declaration that the disease is not the result of fear-based avoidance of activity”, and a clear indication that the disease is not a psychiatric or somatoform disorder” (Chronic Fatigue Syndrome Advisory Committee of the Department of Health and Human Services). There certainly is controversy and disagreement at this time, but that disagreement is not between professionals and “campaigners”. It is between professionals in the UK and professionals elsewhere.

The factsheet claims that: “After sustained pressure from activists the CDC has removed mention of CBT and GET from its website”. This, too, is patently inaccurate and even a cursory investigation of the facts would make that clear. The CDC changed its recommendations at the urging of the Academy of Medicine, the National Institutes of Health, the Department of Health and Human Services, and the Agency for Healthcare Quality and Research, all of whom emphatically agree that the CDC’s former recommendations – that is, the current NICE recommendations – lack evidence based support.

The author of the factsheet states that existing evidence in favour of CBT and GET is “cited by the scientific community”, as if there are no reputable members of the scientific community, and no reputable health policy authorities who disagree. They go on to state that “those who disagree …. cite review articles and reanalyses of trial data published in low impact factor journals such as The Journal of Health Psychology and Fatigue: Biomedicine, Health and Behaviour”.

It is concerning that a reputable resource like the Science Media Centre would publish such a grossly inaccurate claim, one that can be so readily overturned. Those who disagree with the evidence for CBT and GET cite the extensive investigations of the US governmental health authorities. In particular they cite the Agency for Healthcare and Research Quality Publication No. 15-E001-EF, “Diagnosis and Treatment of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome”. That document is readily available online and a quick investigation will reveal that it offers a very long and detailed list of unscientific practices and biases in the research that claims to support CBT and GET. There are a great many such reports by US governmental health organisations. It is unacceptable for the Science Media Centre to write as if these investigations did not take place; as if these documents do not exist – and it is unacceptable not to note that, by comparison, the professional reputations of these organisations far outstrip those of the PACE trial researchers.

The reality is that at this time there are no US governmental health authorities who agree that the PACE trial is “good quality”. It is absurd for any “Factsheet” on ME/CFS to overlook this fact.

Your Trustees’ Report for the year ended 31 March 2016 gives among the SMC objectives its overall goal to help to achieve the aim of the House of Lords Science and Technology Committee which sought to renew public trust in science “by working to promote more balanced, accurate and rational coverage of the important science, health and environment stories that appear in the media.” In the case of the promotion of the science relating to CFS/ME the Science Media Centre have singularly failed in its objectives over many years.

If you are not prepared to retract this factsheet I regret that we have no option but to report our concerns to the Charity Commission.

I look forward to hearing from you shortly.

Yours sincerely

Countess of Mar

Chairman – Forward-ME

Copy to: Professor Jonathan Baker, Chair of Trustees.”

By way of background information, the Science Media Centre (a registered charity) has as its stated mission “To provide, for the benefit of the public and policymakers, accurate and evidence-based information about science and engineering through the media, particularly on controversial and headline news stories when most confusion and misinformation occurs.”  It states that it provides “journalists with what they need in the timeframe they need it, from interviews with leading experts to timely press briefings on topical issues. We provide journalists with information about science and its related disciplines, making it easier for them to get access to the best evidence and expertise. Given our focus on science in the headlines, the SMC works mainly with science and news journalists in the UK’s national news outlets.” The Centre sends out quotes from experts, statistical analyses of scientific studies and Factsheets, in addition to running regular press briefings on the latest hot topic.

Thursday, 5 April 2018

Many woes had He endured

Having just had Easter weekend, I thought that the following hymn would be appropriate –

Many woes had He endured,
Many sore temptations met,
Patient, and to pains inured:
But the sorest trial yet
Was to be sustained in thee,
Gloomy, sad Gethsemane!

There my Saviour faced my guilt,
Pending judgement, unrelieved,
And the horrors which He felt
Were too vast to be conceived.
None can grasp the woe in thee,
Doleful, dark Gethsemane!

Sins against a holy God;
Sins against His righteous laws;
Sins against His love, His blood;
Sins against His name and cause;
Sins immense as is the sea −
Waited in Gethsemane!

On His dying love alone
I depend − with all my need,
Deeds of righteousness I’ve none,
Nothing of good works to plead.
O, how Christ must act for me,
Starting in Gethsemane.

Father, Son, and Holy Ghost,
One almighty God of love,
Hymned by all the heavenly host
In Thy shining courts above,
We poor sinners, gracious Three,
Bless Thee for Gethsemane.

(Joseph Hart, 1712-68)