Resources for doctors – see new Professionals page on WAMES website

Resources for doctors – new web pages for professionals

Mindful of the stresses doctors are under in the NHS these days and the desperate need for doctors with some knowledge of ME, WAMES is rewriting the web pages for professionals. We have begun with some pages for doctors that provide ‘bite size’, easy to assimilate information for over-busy practitioners.

Professionals

  • ME – snapshots for professionals – at a glance quotes from leading publications which summarise the latest thinking about Myalgic Encephalomyelitis.
  • Diagnosis – an introduction – links to 3 short videos summarising diagnosis of ME by experts in their field: Dr Charles Shepherd, Dr David Kaufman, Dr Nigel Speight and Prof Peter Rowe.
  • Diagnostic guidelines – brings together links to the key guidelines: BMJ Best Clinical Practice, NICE (under review), ME Association ‘purple book’, International Consensus Primer, Canadian criteria, US IOM clinicians’ guide and the 2017 Paediatric primer.
  • Conferences and webinars

 

 

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Cardiff University plans research into ME/CFS using ME/CFS Biobank samples

CureME (leading research into ME) blog post: Biobank users

Samples from our Biobank are available to external researchers around the globe. Making these samples available to other researchers increases the chances of achieving much-needed breakthroughs in the aetiology and treatment of ME/CFS, in the most cost-effective manner.

Here are our current collaborators, and their stories:

Professor Duncan Baird is a geneticist with an interest in telomere biology and genome stability, based at Cardiff University. Telomeres are the structures that cap the ends of linear eukaryotic chromosomes. Due to a quirk in the way that DNA is replicated, as cells divide and as we age, telomeres become progressively shorter, ultimately obtaining a length at which they become dysfunctional and trigger the cells to enter a non-dividing state called replicative senescence. Telomeres therefore provide a limit on the number of times cells can divide.

This project hopes to provide an in-depth understanding of cellular ageing of immune cells in patients with ME/CFS and whether this may impact on the pathology of this condition. Providing an understanding of these processes and the technologies to monitor them may in turn lead to prognostic tools and potential therapeutic interventions.

The samples released to Professor Baird were distributed free of charge, as one of the two awardees from the UKMEB’s Christmas Appeal 2017/18, to enable priority research to happen without cost being a barrier. Thank you to everyone who donated.

Read about more recipients of Biobank samples

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Join the #MillionsMissing event in Cardiff, Sat 11 May 2019

Join the#MillionsMissing
global campaign for ME health equality

Help draw attention to ME on Saturday May 11th by joining a Visibility Action in Cardiff city centre:

  • 11:00 am – 4pm
  • at the Hayes, Cardiff – a pedestrianised shopping street
  • take your shoes to leave on show if you can’t stay long
  • sign up to show your intention to get involved

BBC and S4C will be filming and talking to people for news stories and a stand- alone programme. Patients, families, carers and friends are all invited to support this public demonstration.

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ME awareness – in the workplace

Explaining ME in the workplace

Raising awareness of ME is always a good idea – yes? 

But is telling others about your experience of ME always a good idea?

There are many creative ways to describe to friends and family how ME affects the way you feel and disrupts your life. You might unfortunately fear that being so forthcoming with your employer, line manager or work colleagues may backfire, causing them to lose confidence in you, could lead to resentment or bullying, or affect your prospect of promotion or job development.

You are not obliged to disclose any health issues to an employer unless it could lead to health and safety problems.  You may feel you have to give some explanation however if you decide that ‘reasonable adjustments’ or changes in your workplace or work routines will be necessary to avoid relapsing, to enable you to continue working, or be effective in your job. You can also ask your employer or line manager to keep the fact of your illness confidential, and s/he is obliged to do so, when practical.

Many written introductions to ME highlight the severity and long term nature of the condition, which may not aid your employer’s understanding of your needs if you are mildly affected. Though your employer may have access to NHS, DWP or Union leaflets about CFS, so you should be ready to explain exactly how ME affects you, how this could affect your ability to do your job, and if necessary, how your approach to treatment and management differs from NICE recommendations!

Research employment & disability

Do some research or consult an advisor to find out about your rights and your employer’s responsibilities as this might affect what and how you disclose – a good place to start is the ME Association’s leaflet: Employment issues and ME/CFS

Pitch the info at the right level

Any leaflets or videos about ME you offer your employer should be short & easy to digest – the Canadian guidelines for clinicians might be overkill! You can always give more information later once you know what they want or need.

Decide how much info to give

If you tell your employer you are recovering from a severe phase of ME, then you will probably have to give them a lot more info about the illness and ask for more support, than if you are requesting one or two adjustments to your work practices in order to enable you to keep on an even keel and avoid relapse. Read the ME Association’s leaflet for ideas on Explaining ME/CFS to other people

Decide which info to give

Try to work out the key triggers that will make your symptoms worse and which adjustments could help. A US article gives some suggestions: Working with Chronic Fatigue Syndrome & Myalgic Encephalomyelitis   You may need to provide your employer with information about specific difficulties so s/he can suggest feasible changes e.g. for sensory overload, activity pacing, pain, mobility & travel, cognitive problems.  It may not be necessary to mention ME at all if you only need adjustments for a symptom that is common and easily understandable e.g. migraines, back pain

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Millions of parents missing millions of moments

Millions of parents
Missing millions of moments

Missing due to lack of research and care for people with myalgic encephalomyelitis

Do not let them miss a moment more

#MillionsMissing  

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We had lives. Now we are the #MillionsMissing.

We were dancers
We were athletes
We were adventurers

We had careers
We had plans
We had dreams

We had lives
Now we are the #MillionsMissing

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Join #MillionsMissing virtual & visibility actions, May 2019

#MillionsMissing – a global campaign for health equality

A global, grassroots network for people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Join the virtual action in Wales on ME Awareness day – May 12th

Sign up  to show you are missing from your lives and:

  • post a selfie
  • post a photo of your empty shoes
  • share a photo from the protests
  • use your social media profile to show your support
  • Tweet at government leaders about the #MillionsMissing

Join the visibility action in Cardiff on Saturday 11th May

between 11am – 4pm

  • at the Hayes – a pedestrianised shopping street in the city centre

Over the border:

Check the calendar for events in other places

 

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Cognitive behavioural therapy for ME/CFS is not effective. Re-analysis of a Cochrane review

Cognitive behavioural therapy for ME/CFS is not effective. Re-analysis of a Cochrane review, by Mark Vink and Alexandra Vink-Niese in Health Psychology Open

Review abstract:

Analysis of the 2008 Cochrane review of cognitive behavioural therapy for chronic fatigue syndrome shows that seven patients with mild chronic fatigue syndrome need to be treated for one to report a small, short-lived subjective improvement of fatigue. This is not matched by an objective improvement of physical fitness or employment and illness benefit status.

Most studies in the Cochrane review failed to report on safety or adverse reactions. Patient evidence suggests adverse outcomes in 20 per cent of cases. If a trial of a drug or surgical procedure uncovered a similar high rate, it would be unlikely to be accepted as safe. It is time to downgrade cognitive behavioural therapy to an adjunct support-level therapy, rather than a treatment for chronic fatigue syndrome.

From the discussion section of the paper:

Our analysis of the RCTs included in the Cochrane CBT review identified 12 areas of concern. These included potentially selecting patients who do not have the disease. A failure to exclude patients with comorbid depression and anxiety, even though CBT is the most effective treatment for both, as a meta-analysis by Tolin (2012) found. One of the other important problems of the trials and the review itself was the use of subjective primary outcomes even though in non-blinded trials, self-reported outcomes can
produce highly inflated estimates of treatment-related benefits contrary to objective outcome measures (Wilshire et al., 2018b). Moreover, it is unclear why the trials relied
on subjective primary outcomes when the basis of CBT for CFS is that patients suffer from false illness beliefs and they do not know how to interpret their symptoms correctly.

The flaws in the review and the trials, as discussed at the beginning of this article, all created a bias in favour of the intervention. It was therefore crucial to demonstrate
accompanying improvement on more objective measures yet these did not yield significant treatment effects. Most notably, treatment did not affect fitness.

Our analysis shows that CBT did not improve the quality of life scores either, in a disease where these scores are much lower than in the general population and the lowest compared to 20 other chronic illnesses which included stroke, lung cancer and MS (Falk Hvidberg et al., 2015). Nothing has changed in that respect compared to the 1996
health status report (Komaroff et al., 1996) despite the widespread use and promotion of CBT and GET as effective treatments, which provides indirect evidence of their inefficacy…

Real-world application of CBT in NHS CFS clinics shows equally poor results. Moreover, patients who had been treated with CBT and GET in these clinics had less improvement in fatigue at 12 months than those who had been offered activity management (Crawley et al., 2013).

This is in line with the outcomes of patient surveys which have repeatedly shown that rest and activity management (pacing) are the most helpful, with CBT and GET among the least effective therapies (Kirke, 2017). Just 3 per cent of CFS patients report no longer having CFS after NHS treatment; 2–5 years after the initial assessment, this was 5.7 per
cent (Collin and Crawley, 2017), which is essentially the same as the naturally occurring recovery rate of 5 per cent (Cairns and Hotopf, 2005).

The impact of CFS results in disruptions to productivity and meaningful occupation, which is often not the case with other conditions (Roberts, 2018). An influential systematic review by Cairns and Hotopf concluded in 2005 that because there is increasing evidence for the effectiveness of CBT and GET, that ‘Medical retirement should be postponed until a trial of such treatment has been given’.

Yet our reanalysis, just like the reanalysis of the Cochrane GET review (Vink and Vink-Niese, 2018b), shows that CBT and GET do not improve the number of hours worked or sickness and disability benefit status.

Implications for practice

1. For clinicians
If a skilled CBT therapist is available, who acknowledges the severity of this debilitating multisystem disease, then offering CBT to patients as an adjunct support therapy is
something to consider. Especially when patients also suffer from a comorbid depression or anxiety disorder or have problems adapting to a life of disability/dependence on others. The findings of this reanalysis do not encourage to instigate treatment programmes of CBT for people with CFS as has been the case so far.

2. For policymakers, occupational health services and illness benefit assessors
This reanalysis shows that CBT does not lead to an improvement of fitness, a reduction of the number of patients on sickness and disability benefits or an improvement of employment status. Forcing patients to undergo this expensive treatment as a requirement to be eligible for illness benefits or medical retirement causes a lot of stress for
patients and their families without any benefits to patients and society.

3. For people with CFS
For many patients with CFS, becoming involved in a CBT programme has been compulsory to be eligible for illness benefits or medical retirement. Based on the notion that if they did not want to be treated with CBT, they were after secondary gains and not motivated to get better. This reanalysis however shows that CBT does not lead to significant improvement in quality of life. Nor does it lead to an improvement in fitness or employment status or reduction of the number of patients receiving sickness and disability
benefits.

In any event, people with CFS, if offered this therapy, should know that any effect on fatigue is likely to be short-lived and small in degree. Also, that six out of seven patients will undergo the treatment without any benefit andone in five will suffer negative consequences because of it. However, if patients suffer from a comorbid depression or
anxiety disorder, or they need help coping with a debilitating illness, then it would be wise to consider help or support from a qualified and knowledgeable psychologist.

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Social Services can threaten families of children with Chronic Fatigue (ME)

Online blog Broadly highlights the fact that one in five children with ME are investigated by social services, with some even being forcibly placed in a hospital or foster homes, with destructive effects on their health.

Social services can threaten families of children with Chronic Fatigue, by Natasha Wynarczyk, May 2 2019

In the article WAMES’ medical advisor Dr Nigel Speight gives his view of the situation:

This is approaching a “national scandal,” according to Dr. Nigel Speight, a pediatrician from the North East of England who specializes in ME. Throughout his 30-year career, he has helped large numbers of families fight child protection cases where children with the condition have been at risk of removal from their parents. He says that anyone—including the child’s doctor, their teacher, and even a neighbor or relative—can get social services involved, and the decision to take a family to court often rests with people who have never even met the children…

“Many doctors these days don’t take proper case histories,” Speight says. “They are focused on ordering tests—but you can diagnose ME in an hour if you properly investigate the patient’s history. Either through ignorance or wilful avoidance, many doctors fail to make the diagnosis.”

“you can diagnose ME in an hour if you properly investigate the patient’s history”

“In some cases of GET, children with ME are being told to increase their energy levels by 10 per cent a week—if I did this, I’d be an Olympic athlete,” Speight says. He adds that when families complain that the child is being made more ill, they can be told to “push through the pain.”

“One of the most heartbreaking cases I’ve dealt with was an eight-year-old girl who was forced to have GET,” he adds. “Her parents were told that if they didn’t comply, she’d be taken away [by social services].

“Her parents reluctantly allowed her to be admitted to hospital where she was given vigorous physiotherapy for several months. She was able to walk before being admitted, but after she deteriorated to the extent that she became bed-bound and needed to be fed via a tube.”

He adds that while he may have an “unduly pessimistic view” of the situation due to his involvement in many of the worst cases around the UK, these may be the tip of the iceberg. For every family who have involvement with social services, he says, there are many others subjected to “disbelief and pressure, especially around school attendance”.

Read the full article

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ME: a global health scandal – Stop ignoring ME video – ME Awareness week 2019

ME: a global health scandal

People with ME are not asking for special treatment.

We are asking for humane treatment and health equality.

ME Awareness week 6th – 12th May 2019

Produced by Broken Battery, 2 May 2019

ME is one of the most misunderstood diseases.

1 in 5 parents face child protection proceedings, patients have been sectioned and abused, NHS treatments make over 50% of patients worse, biomedical research has been pitiful. A global health scandal that has been ignored for over 30 years.

Low quality of life

ME has a lower quality of life than HIV/AIDS, Stroke, Parkinsons, Multiple Sclerosis [1], but is one of the most misunderstood diseases. 80% of doctors think its psychosomatic [2].

Child protection proceedings

Misunderstanding has led to 1 in 5 parents face child protection proceedings [3]. A recent example is an April 2019 iNews article where Georgia Whyard’s teachers said she had ‘school phobia’ despite having  an official diagnosis of myalgic encephalomyelitis [4].

Mental health sectioning

Misunderstanding has led to patients being sectioned. In 2003 police forced entry into Sophia Mirza’s mother’s home, sectioned, and forced Sophia to a mental hospital. After being released Sophia had severely deteriorated and later died. An independent Neuropathologist found Sophia’s spine contained massive infection and Sophia was the first patient to have ME listed as her cause of death [5].

Physical abuse

Misunderstanding has led to abuse, Ean Proctor was removed from his home against his parents’ wishes and hospitalized under a “Place of Safety Order.” While in the hospital his health deteriorated as he was subjected to inhumane treatments: being placed into a therapy pool to force him to use his arms to swim, although he was unable to and would sink underwater; [6]

Harmful treatments

Many ME/CFS patients have been harmed by Graded Exercise Therapy. Over 50% of patients consistently report a worsening of their condition in an analysis of 18000 patients from 10 surveys from multiple countries [7]. Many have been made permanently disabled.

Fraudulent scientific research

The PACE Trial has been widely discredited [8] Over 100 scientists and over 80 international charities (Nearly every one) signed an open letter asking for the trial to be independently reanalysed [9]. Former science teacher Carol Monaghan MP described PACE as “one of the greatest medical scandals of the 21st century” and said “As a scientist, I am appalled by the methods used in the trial, which included changing the parameters and success criteria midway through the study. This has been widely discredited in the research community” Over 30 MPs have signed up to the MAIMES Campaign calling for an investigation into The PACE Trial [10].

Underfunded research

ME receives a disproportionally small amount of UK research funding given the prevalence of the condition. Despite the disease burden, the level of research spend per ME/CFS patient is considerably lower than in other illnesses. MS, for example, receives approximately 20 times more funding worldwide despite 2.5 times less prevalent than ME [11].    Read references & credits

#StopIgnoringME     #TimeForUnrestWales     #HelpNHSbeMEaware

#BeMEaware    #WAMESMECFS

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