News from Malta

Mike Harley

Mike Harley

Senior Member (Voting Rights)
Hi

I'm keen to talk to ME patients in Malta as part of my challenge to raise awareness across Europe.

If anyone would like to answer a few short questions or tell me their story that would be brilliant.

I'll be there on Feb 25th to run the marathon and am working with the ME/CFS/Fibro Alliance there, so hopefully can make a bit of noise for research whilst I'm out there

Thanks

Mike
www.mikeseumarathons.eu
 
I didn't know where to post this as it came from the Independent Malta:
article outlines their Budget for 2020

Fibromyalgia and Myalgic Encephalomyelitis (ME) will form part of the government’s list of conditions eligible for help, meaning that persons unable to work due to these conditions will, subject to eligibility tests, be able to receive medical help.
Click to expand...

https://www.independent.com.mt/arti...emented-by-15-or-35-one-time-bonus-6736214773

probably a complete coincidence but Clare Francis (president of AfME) was in Malta talking about an unrelated issue.
Yachtswoman, author, ME spokeswoman Clare Francis MBE to give talk in aid of Save Valletta’s Skyline
https://www.independent.com.mt/arti...-in-aid-of-Save-Valletta-s-Skyline-6736214480

are there any ME organisations in Malta? one for outreach @Andy
 
Sly Saint said:
I didn't know where to post this as it came from the Independent Malta:
article outlines their Budget for 2020



https://www.independent.com.mt/arti...emented-by-15-or-35-one-time-bonus-6736214773

probably a complete coincidence but Clare Francis (president of AfME) was in Malta talking about an unrelated issue.
Yachtswoman, author, ME spokeswoman Clare Francis MBE to give talk in aid of Save Valletta’s Skyline
https://www.independent.com.mt/arti...-in-aid-of-Save-Valletta-s-Skyline-6736214480

are there any ME organisations in Malta? one for outreach @Andy
Click to expand...

Yes there is, I've interviewed Ruth from the Alliance over there. They do a fantastic job of keeping M.E in the public consciousness. http://www.mikeseumarathons.eu/malta.html

You can find their group of Facebook too https://www.facebook.com/groups/me.cfs.fmalliance/
 
“I spend days in bed and cannot go out more than once a week”

Posted On January 30, 2020
Rebecca Camilleri suffers from a condition of which few people are aware, and also because to date, this condition is not recognised as a disability.

Myalgic Encephalomyelitis, or ME for short, resembles Multiple Sclerosis, and some 70% of sufferers also suffer from Fibromyalgia. In fact, Rebecca is one of those who suffer jointly from both ME and Fibromyalgia.

Persons suffering from this condition, about which scientific knowledge is scant, experience debilitating fatigue which prevents them from functioning normally...

...Rebecca is urging all fellow sufferers who need assistance to contact the voluntary organisation ME, CFS & FM Alliance Malta
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https://europe.easybranches.com/malta/2028490
 
Last edited by a moderator:
Fibromyalgia And ME Sufferers Urge Malta To Recognise Their Invisible Condition As A Disability
Malta should formally recognise fibromyalgia and Myalgic Encephalomyelitis (ME) as a disability, a group of people suffering from the conditions has urged the government.

“Governments in Malta have been ignoring our pleas for over 10 years,” the ME, CFS and Fibromyalgia Alliance said.

“By not recognising us as invisible disabilities, this is leaving many to fall into poverty, depression and desperate without an income.”

“We’re unable to afford medication, vitamins and proper nutrition to help alleviate symptoms.”

They warned that this has left several women and men stuck in abusive relationships, unable to leave because they lack financial freedom.

The Alliance estimates that around 40% of fibromyalgia sufferers and 75% of ME sufferers are housebound and unable to work, while 25% of ME sufferers are bed bound and 3% of them die.

“They are truly devastating for both the sufferers and their loved ones alike, as little help can be found in Malta. Not enough is known amongst medical specialists to properly diagnose and give adequate treatments as the Government refuses to accept us as a disability.”

https://lovinmalta.com/news/news-hu...se-their-invisible-condition-as-a-disability/

Click to expand...

https://lovinmalta.com/news/news-hu...se-their-invisible-condition-as-a-disability/

(note: Geradas home country)
 

Manoel Island lit up to raise awareness about three illnesses
1 hour ago|11 min read
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Manoel Island was lit in blue and purple on Tuesday night in an annual event organised globally by NGOs with the aim of raising awareness for three disabling illnesses: myalgic encephalomyelitis, chronic fatigue syndrome (ME, CFS) and fibromyalgia.

The Light Up the Night 2021 initiative was the work of the Gżira council in collaboration with MIDI.

ME and fibromyalgia are two distinct chronic and invisible disabilities, which roughly make up 0.2%-6% of Malta's population. An estimated 75% to 85% of these sufferers are predominantly women.
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https://timesofmalta.com/articles/v...-raise-awareness-about-three-illnesses.871528
 

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ME/CFS & FM Alliance - Malta Vo/818 is on Facebook.

Impressum

The ME, CFS & Fibromyalgia Alliance (Malta) is a network providing for individuals with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and FM (Fibromyalgia) conditions and their respective Support & Carer Groups, advocating public awareness about their debilitating disabilities and seeking recognition as a National Patients’ Organisation (NPO) duly constituted in Malta to represent the interests of sufferers and to act as a focal point-of-reference in matters concerning ME/CFS & Fibromyalgia disbailities in the Maltese Islands and at European level.

https://m.facebook.com/me.cfs.fm.AllianceMalta/
 
Learning to see invisible illnesses, using comics
The ME, CFS and Fibromyalgia Alliance Malta has released a series of comics depicting the realities of living with invisible illnesses and how finding help to deal with the condition can sometimes be insurmountable.

Depicting scenes that show how ordinary tasks, like grocery shopping, starting a career or even arriving at a correct diagnosis, come with extra challenges when suffering from an invisible illness, the NGO, together with the Malta Trust Foundation and the University of Dundee, developed the comic to raise more awareness and reach people who may be suffering in solitude.

“This is a first for Malta and we sincerely hope it will help families, children and schools to understand what their loved ones may be going through,” spokesperson Rebecca Camilleri told Times of Malta.

“It is about our daily life experiences and what we go through, like how going grocery shopping might affect the rest of your day or how it is sometimes hard to find support from doctors.

“We want people to know that they are not alone and that many of us have gone through the same experiences.”

The comic is available to download for free in Maltese and English and will be released in print later this year.
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https://timesofmalta.com/articles/view/learning-to-see-invisible-illnesses-using-comics.956932
 
ME, CFS & Fibromyalgia Alliance condemns benefits abuse

The Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) & Fibromyalgia (FM) Alliance has condemned the benefits fraud abuse, questioning why people suffering with Fibromyalgia and Myalgic Encephalomyelitis are being consecutively told that there are not enough funds to even consider giving them benefits.​

"It is very disheartening to learn that, political persons who are supposedly elected in the Maltese Parliament to help their constituents and the Maltese citizens, are instead abusing of their power. This brings to light the questions: Why are persons diagnosed with Fibromyalgia and Myalgic Encephalomyelitis being consecutively told that there are not enough funds to even consider giving them benefits?" the alliance asks.

It was recently reported in The Sunday Times that former Labour MP Silvio Grixti was implicated in a scandal that allegedly enabled hundreds of people to receive disability benefits which they were not entitled to. ​

More: https://www.independent.com.mt/arti...a-Alliance-condemns-benefits-abuse-6736254680
 
Persons with Fibromyalgia and M.E. condition can receive a new benefit from next August with the amount being determined according to the severity of the condition.

Speaking to TVMnews, Social Policy Ministry’s Permanent Secretary Mark Musu’ said that although the condition is not considered as a disability in the law, these persons will now be entitled for the social assistance.

Persons with disabilities, considered as hidden conditions, including Fibromyalgia and M.E. will from August be eligible for the benefit which varies between €99 and €192 a week according to the severity of the case.

Continues at:
https://tvmnews.mt/en/news/new-benefit-for-persons-with-fibromyalgia-and-m-e-condition/

https://twitter.com/user/status/1804511879089254583
Click to expand...


Video, presumably in Maltese:
 
Dolphin said:
Persons with Fibromyalgia and M.E. condition can receive a new benefit from next August with the amount being determined according to the severity of the condition.

Speaking to TVMnews, Social Policy Ministry’s Permanent Secretary Mark Musu’ said that although the condition is not considered as a disability in the law, these persons will now be entitled for the social assistance.

Persons with disabilities, considered as hidden conditions, including Fibromyalgia and M.E. will from August be eligible for the benefit which varies between €99 and €192 a week according to the severity of the case.

Continues at:
https://tvmnews.mt/en/news/new-benefit-for-persons-with-fibromyalgia-and-m-e-condition/



Video, presumably in Maltese:
Click to expand...


Although it's obviously not great that ME is still not recognised as a disability in law this feels like a win for the ME Association there who I know work really hard to keep ME in the public eye. Well done to Ruth, Rebecca and Maria if you're reading this!
 
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