Research

 

From 'The relation between ME/CFS disease burden and research funding in the USA' article by Dimmock & Jason
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Myalgic Encephalomyelitis (ME) is a complex illness with symptoms that cross several medical disciplines – neurology, cardiology, endocrinology, immunology, muscle pathology, epidemiology and many other areas. 

Research into the underlying cause of ME is difficult because of the multisystemic nature of the illness. 

ME research is appallingly underfunded compared to other serious medical conditions.

ME is one of the greatest public health challenges of our time despite being classified as a neurological illness by the World Health Organisation (G93.3). 

ME, a biological condition has been mismanaged throughout medicine.

The evidence shows that ME has mostly been misunderstood and maligned, the patients neglected and gaslit because diagnosis and management.... or lack of management.... or inappropriate management, are too often driven by lack of medical knowledge and misconceptions, and policy development as well as research hampered by a certain psych cabal. 

Simplistic and ineffectual psychological therapies are being offered in place of real treatments, wasting public money and doing nothing to help patients.

This has resulted in ME patients having no real healthcare service and far too little progress being made in attracting new researchers or clinicians to study the disease. In fact in the UK a NICE assessment ranked BPS papers as 87% very low quality and 13% low quality. 

As well as the above mentioned issues, the overemphasis on fatigue unfortunately 'allowed' ME to become more and more disappeared and to be defined by some as a psychiatric illness, thus condemning some very seriously ill patients to a lack of proper diagnosis, lack of appropriate testing, lack of treatment and understanding of the symptoms, and equally damaging to a lack of interest in pursuing biological research for the condition.

ME is more debilitating than many chronic diseases including multiple sclerosis, chronic renal failure, congestive heart failure, lung cancer, stroke, and type-2 diabetes.
As many as 75% of patients are unable to work.
An estimated 25–29% are homebound or confined to bed.
ME costs the state thousands in lost productivity and medical costs a year.

Mary Dimmock and Leonard Jason describe the relationship between ME disease burden and research funding in the USA in a research article entitled The relation between ME/CFS disease burden and research funding in the USA.

Actively seeking funding and research must be our top priority if we are to obtain a better understanding of ME and discover effective forms of treatment.

We at ME Advocates Ireland (MEAI) regard the funding and promotion of biomedical research as much a priority as education and awareness raising of appropriate information about ME.

We need to invest only in biomedical research studies and projects that will lead to a better understanding of underlying disease mechanisms in ME across all the medical disciplines involved, in the development of reliable diagnostic tests for use in clinics, and in safe and effective forms of treatment.

From 'The relation between ME/CFS disease burden and research funding in the USA' article by Dimmock & Jason.

In recent years there are very reputable scientists now involved worldwide in ME research adopting appropriate and more stringent diagnostic criteria on trial participants. Please see the research that is taking place via the links below.

Summary of recent significant biological research findings in people with ME here.

The US ME advocacy group 'ME ICC Info' has provided us with a list of ICC Research, see more  

here. The same links will always take people to an up to date version. Thanks to Colleen Steckel for sharing the document with us.

 

The ME Association in Australia, ‘Emerge Australia’ provide summaries of the latest research with links to articles in their monthly research digest, here is the Research Digest for July.

Here is a link to Emerge Australia’s complete  

Research Digest.

Research collated by the ME Association UK here is an extensive library updated regularly and free to access.

Good quality research provides much-needed hope for a deserving and desperate patient community. 

ME Research UK  

One of the ME research groups closest to us is in the UK, i.e., ME Research UK whose primary aim is to fund biomedical research into ME – to find its cause, develop effective treatments and ultimately discover a cure. Learn about their projects, the research they have supported and more here.

Invest in ME Research 

Invest in ME Research another UK research group is an independent charity whose work involves attempting to change this situation by annual international research colloquiums and public conferences. 

The charity has been funding and facilitating biomedical research into ME and the training of medical students.

More about IIME here. 

From 'The relation between ME/CFS disease burden and research funding in the USA' article by Dimmock & Jason.

The table included in an NIH report published March 2023 displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH), as well as disease burden data published by the National Center for Health Statistics (NCHS) at the Centers for Disease Control & Prevention (CDC). ME appears as Chronic Fatigue Syndrome (ME/CFS). Funding is shown for previous years including 2021 and 2022, with estimates for 2023 and 2024. The figures show that ME research continues to be appallingly underfunded compared to other serious medical conditions.  (It may be easier to see the table on a laptop or computer)

Update

30/12/23

As the year is nearing its final chapter, it is time to review some of the ME studies of 2023; here’s an overview of some of the research this last year looking at Myalgic Encephalomyelitis (ME) via ME/CFS Sceptic. 

 Looking Back on a Year of ME/CFS Research 2023

 

Please note that not all the research labeled CFS or ME/CFS used strict ME criteria so results may not be specific to ME.

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 

Severe/Very Severe Myalgic Encephalomyelitis (ME) Carers Notes

 

‘Severe ME More Notes for Carers’ by Greg Crowhurst

‘More Notes for Carers’, Greg’s most recent book for carers, gives an overview of how the carer might approach relationship, interaction and care for people diagnosed with Severe or Very Severe ME. Whether in the context of decades of suffering or newly faced with the unexpected decline of a family member or friend into severe illness, it is not always obvious what to do and when to do it, in the best way.

Greg’s hope is to show how, in this complex situation, you can not only be present with the patient, but learn how to communicate, be aware, and be skilled adequately to make all the difference in the world to the quality of care.

Greg’s book includes pieces from three of us at MEAI; Corina, Christine and Moira were grateful to be invited to contribute to his important book.

‘More Notes for Carers’ gives an overview of how one might approach, interact & care for people with Severe and Very Severe ME. An incredibly concise 430-page book well worth the price £16 Paperback & £6.50 Kindle.

More details & buying options via links below:

• https://stonebird.co.uk/morenotes/index.html 

• More Notes For Carers (lulu.com) 

• Severe ME: More Notes For carers eBook : Crowhurst, Greg: Amazon.co.uk: Books

Much thanks to Greg Crowhurst

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk. The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance in some instances. 

Sunflower Card & Lanyard for Hidden Disabilities

 

Sunflower Card & Lanyard 🌻

The Sunflower is a symbol for people with non-visible disabilities.

Wearing the Sunflower lanyard discreetly indicates to people around the wearer including staff, colleagues and health professionals that they need additional support, help, or a little more time. The Sunflower card has been launched locally in Australia, Belgium, Canada, Denmark, Ireland, the Netherlands, New Zealand, the UK, the UAE and the USA.

The lanyard can be used in shops and airports where you may need support. The card could be a very useful resource during summer holiday season for anyone travelling, queuing in tourist zones, other.

Visit the Hidden Disabilities Sunflower Ireland page online (or choose your own country by hitting the flag in top right corner of the home page) for more information.

To get a personalised Myalgic Encephalomyelitis (ME) custom-made sunflower lanyard go straight to the ME hidden disabilities specific page here (using a laptop/PC may be a better option).

The card costs €13 which includes a plastic wallet to protect it. Postage is just under 5 euros for delivery within Ireland.

Prices may change, please check the Hidden Disabilities Sunflower lanyard website for more information.

The Myalgic Encephalomyelitis Card Pack

Myalgic Encephalomyelitis (ME) custom-made sunflower hidden disabilities card & lanyard are available to people in Ireland and elsewhere from the Hidden Disabilities Store (UK) who also have an Irish page (and other countries' pages) on their website. (hit your countries flag for access). Direct link to the Myalgic Encephalomyelitis (ME) card here

 

FRONT OF CARD READS:  I have Myalgic Encephalomyelitis (ME)

BACK OF CARD READS:  My medical condition means I may have difficulty communicating and can have problems with my balance and my ability to stand or to walk unaided.

On the back of the cards, you can:

1. Add your photo - upload a high-resolution, clear photograph of yourself

2. Add your name - add the name that you want people to use when addressing you

3. Add icons - use the icons described . You can add up to five.

4. Add a contact - add a name and number to be contacted with your consent or in an emergency

Link to Myalgic Encephalomyelitis Card again here

Feedback from ME Patient

‘Take care on registering that you have correctly added Ireland because the page automatically registers UK, they have an office in Co Clare so the Irish post only takes a few days, great service.

I found the website kept resetting and had to use a laptop to order, not successful using phone/tablet.

Everyone gets to personalise the back of the card with your own details re assistant/triggers/needs.’

~ Ashling

The hidden disabilities card can include your photo and name.

Thanks to ME patient Ashling for the images included in our post.

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk. The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance in some instances. 

ME Healthcare Related Survey Feedback

Comments about healthcare in survey feedback from our May 2023 ME Awareness survey entitled 'General Practitioners’ Knowledge and Clinical Practice in Relation to Myalgic Encephalomyelitis (ME) for ME Patients or Carers', which we held during ME Awareness Month 2023

"It is not always black and white in how belief relates to patient treatment. GPs attitudes tend to be dismissive or simply ignore M.E even when they are not outright attributing to psychological reasons. I suspect this is partly an insecurity about admitting their own ignorance or limitations of knowledge and discomfort with a dynamic where the patient is more knowledgeable or can at least assess the GPs level of knowledge.

Education for GPs is vital not just in terms of properly understanding M.E. but also in how they view patients and their role in their own health.
Patients are not just dealing with GPs with lack of training and education, but a resistance to addressing this knowledge gap and a disregard of the patient’s knowledge of their own condition and how it impacts on them.

Even if a GP may accept it a physiological condition on a cursory level, you may still be treated much the same problematic and harmful ways as the GP who mistakenly believes its psychological.” (Survey participant in Ireland)





More comments about healthcare from participants in a survey entitled 'General Practitioners’ Knowledge and Clinical Practice in Relation to Myalgic Encephalomyelitis (ME) for ME Patients or Carers' which we held during ME Awareness Month 2023 here.








Resources to support ME patients to access better healthcare

1. Myalgic Encephalomyelitis (ME) Diagnosis & Management Information for Doctors & Healthcare Providers: http://meadvocatesireland.blogspot.com/2023/05/myalgic-encephalomyelitis-me-diagnosis.html

2. Communicating With Your Doctor - Helping Your Doctor to Understand Myalgic Encephalomyelitis: http://meadvocatesireland.blogspot.com/2023/05/communicating-with-your-doctor-helping.html

We will publish all survey feedback from this healthcare related survey  'General Practitioners’ Knowledge and Clinical Practice in Relation to Myalgic Encephalomyelitis (ME) for ME Patients or Carers', held in May 2023, at a later time.

Thanks to the International ME Community for your support and feedback during our ME awareness survey held in May 2023

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk. The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance in some instances.