MALTA
I've been speaking to the Malta ME, CFS & Fibromyalgia Alliance about ME there and here's a summary of my findings from talking with them and my own research.
Number of ME patients in Malta
There is no study or any estimates to show or at least a demarcation if there ever was any study to establish a percentage of how many ME sufferers there are there. Some doctors say it is approx. 0.02 % same as in Europe. Due to unwillingness to diagnose and lack of knowledge on ME, it's difficult for doctors to give an accurate figure.
Health authorities awareness of ME and their perception
There is awareness to a certain extent about ME, thanks to the work of the NGO that had struggled hard to elucidate what the toll of suffering with the illness brings to those are afflicted by this disease. The professionals who are most conscious of ME are neurologists. However not all medical professionals recognise ME as a disease in its actual entity. Some doctors claim that it a psychiatric illness. It seems that when medicine fails to explain cryptic disease with no original cause, the alternative can often be to stigmatise patients.
Some doctors insist that FM and ME are one and the same, others that FM could be the onset of ME, others that it's non existent, others believe in it but are not as keen to work with patients with ME, others seems to have no clue what to do with the sufferers. What's for certain is that many patients are sent for psychiatric evaluation. Health authorities seem to be fighting them for some unknown reason. Many are diagnosed but told that 'they cannot know for certain as it's a controversial condition."
Treatments recommended by doctors
Unfortunately it seems that there are no specific treatments that can target the disease and alleviate the multiple constellation of symptoms that renders one crippled. Some ME patients are bed-bound, because there is no medicine that can control the symptoms and help improve life independence. The only therapy encouraged for ME patients is hydrotherapy pool and mild exercises. However ME sufferers seldom benefit from this form of therapy.
In Malta they tend to follow the UK guidance, psychological therapy, cognitive behavioural therapy and other medicines such as Cymbalta and Lyrica are given. Many are also sent for psychiatric evaluation many times being prescribed with anti depressive medications.
Doctors and biomedical research
Doctors could be imposed by the health authorities to learn but it would appear that many professional doctors need to pay for their pursued education in such matters. Some feel that they are knowledgeable, others have less motivation to learn. FM only gets 1 paragraph mention in the whole university curriculum. ME none. Doctors are required to keep updated on their studies, however less so for ME.
The ME, CFS & Fibromyalgia Alliance and their activities
From researching their website I learnt that 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.
The aim of the group appears to to act as a support group and advocate for patients with ME/CFS & Fibromyalgia and to help individuals achieve a diagnosis and to offer advice on personal needs. Also to participate in the larger network of international organizations of ME/CFS & Fibromyalgia and other patient groups as deemed necessary from time to time. Furthermore to promote ongoing public awareness and support professional development in the area of ME/CFS & FM.
Objectives:
1. To achieve recognition of this group of diseases
2. To approve a statute and elect a council
3. To create a database of diagnosed / undiagnosed patients
4. To discuss and plan future activities
5. To identify people, including professionals who can contribute to that Aims of the group.
Other activities:
1. Meeting with relevant Ministers and political people
2. CME (Continuing Medical Education) in collaboration with the Malta College of Family Doctors
3. Fundraising activities: e.g. Summer BBQ; Annual Dinner.
Benefits available to patients
Unfortunately as ME is viewed as an invisible disease, and no one can, or seems to want to understand that the bodily image is just a semblance of health. But beneath it there is ineffable sufferings and disabilities. Like restricting movements due to constant pain, chronic fatigue, intractable headaches and so forth. Whilst some seem to be able to get benefits whilst others who are not as sick and disabled seem to find it harder to get benefits. ME patients appear to be luckier than FM patients in this regard. It would seem that only a very small percentage manage to get help. Estimations are approx 1% . They have 2 type of benefits. Disability and invalidity. Invalidity is only a temporary help, one needs to go every 6 months or a year to reconfirm their invalidity. Longest one can be on this is for roughly 5 to 6 years maximum.
CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise) in Malta and the PACE Trial controversy
The consensus is that cognitive therapy can help, by focusing one’s attention on things that takes away the attention from the imprisoning symptoms. But the view is that it does not always work. Graded Exercises can be of a benefit, done tailor-made like the as with a hydrotherapy pool. But exercises have to be mild without demanding exertion on the individual. Patients in Malta are certainly aware of the controversy and that the CBT and GET are not good for ME patients and should be excluded if they are too much for the patient. Like with other countries across the world, patients often, if not always, seem to know more than doctors.
What they'd like to see change
They would like to see comprehensive awareness, addressing the multitude of ME symptoms. Less bureaucracy when it comes to giving free treatment. Those who can work, need to be offered a job from home. Financial support, education to those who care for the sick, and most of all understanding without prejudice. Above all the mission is for more awareness, recognition, sustainability.
Furthermore there's a need for a holistic approach to patients. Doctors well knowledgeable on the matter to give proper guidance. New treatments given a chance for trial in Malta. Government help to buy medication/vitamins and proper diet. Also financial help for daily needs like food and bills. They want to be independent to a certain point, so having work from home can keep some activity and meaning to a monotonous life ( for those who could of course ) without taking away from benefits.
Practical moves to help patients
In terms of practical objectives, there's a few things that patients are looking for including full assessment of patient’s motor ability to establish rate of disability. Having home aid, having the medicine for free. Being recognised as disabled so not having to wait for long time when during a hospital visit. More awareness among health professionals, and understanding of the syndromes that make patients feel worse when maltreated and misunderstood. ME patients could be helped physically and mentally, provide free medication and free physiotherapy. Home help, more availability of free medication and treatment, long term treatment, education for carers, education for health professionals and an increase in the syllabus of ME and FM for university medical students, and more practice first hand as first aiders. Above all they would like to have the authorities understand that they need 24/7 help. They want doctors and authorities to understand what it really is and that it is a life threatening condition that should not be taken lightly.
Feb 2018
Number of ME patients in Malta
There is no study or any estimates to show or at least a demarcation if there ever was any study to establish a percentage of how many ME sufferers there are there. Some doctors say it is approx. 0.02 % same as in Europe. Due to unwillingness to diagnose and lack of knowledge on ME, it's difficult for doctors to give an accurate figure.
Health authorities awareness of ME and their perception
There is awareness to a certain extent about ME, thanks to the work of the NGO that had struggled hard to elucidate what the toll of suffering with the illness brings to those are afflicted by this disease. The professionals who are most conscious of ME are neurologists. However not all medical professionals recognise ME as a disease in its actual entity. Some doctors claim that it a psychiatric illness. It seems that when medicine fails to explain cryptic disease with no original cause, the alternative can often be to stigmatise patients.
Some doctors insist that FM and ME are one and the same, others that FM could be the onset of ME, others that it's non existent, others believe in it but are not as keen to work with patients with ME, others seems to have no clue what to do with the sufferers. What's for certain is that many patients are sent for psychiatric evaluation. Health authorities seem to be fighting them for some unknown reason. Many are diagnosed but told that 'they cannot know for certain as it's a controversial condition."
Treatments recommended by doctors
Unfortunately it seems that there are no specific treatments that can target the disease and alleviate the multiple constellation of symptoms that renders one crippled. Some ME patients are bed-bound, because there is no medicine that can control the symptoms and help improve life independence. The only therapy encouraged for ME patients is hydrotherapy pool and mild exercises. However ME sufferers seldom benefit from this form of therapy.
In Malta they tend to follow the UK guidance, psychological therapy, cognitive behavioural therapy and other medicines such as Cymbalta and Lyrica are given. Many are also sent for psychiatric evaluation many times being prescribed with anti depressive medications.
Doctors and biomedical research
Doctors could be imposed by the health authorities to learn but it would appear that many professional doctors need to pay for their pursued education in such matters. Some feel that they are knowledgeable, others have less motivation to learn. FM only gets 1 paragraph mention in the whole university curriculum. ME none. Doctors are required to keep updated on their studies, however less so for ME.
The ME, CFS & Fibromyalgia Alliance and their activities
From researching their website I learnt that 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.
The aim of the group appears to to act as a support group and advocate for patients with ME/CFS & Fibromyalgia and to help individuals achieve a diagnosis and to offer advice on personal needs. Also to participate in the larger network of international organizations of ME/CFS & Fibromyalgia and other patient groups as deemed necessary from time to time. Furthermore to promote ongoing public awareness and support professional development in the area of ME/CFS & FM.
Objectives:
1. To achieve recognition of this group of diseases
2. To approve a statute and elect a council
3. To create a database of diagnosed / undiagnosed patients
4. To discuss and plan future activities
5. To identify people, including professionals who can contribute to that Aims of the group.
Other activities:
1. Meeting with relevant Ministers and political people
2. CME (Continuing Medical Education) in collaboration with the Malta College of Family Doctors
3. Fundraising activities: e.g. Summer BBQ; Annual Dinner.
Benefits available to patients
Unfortunately as ME is viewed as an invisible disease, and no one can, or seems to want to understand that the bodily image is just a semblance of health. But beneath it there is ineffable sufferings and disabilities. Like restricting movements due to constant pain, chronic fatigue, intractable headaches and so forth. Whilst some seem to be able to get benefits whilst others who are not as sick and disabled seem to find it harder to get benefits. ME patients appear to be luckier than FM patients in this regard. It would seem that only a very small percentage manage to get help. Estimations are approx 1% . They have 2 type of benefits. Disability and invalidity. Invalidity is only a temporary help, one needs to go every 6 months or a year to reconfirm their invalidity. Longest one can be on this is for roughly 5 to 6 years maximum.
CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise) in Malta and the PACE Trial controversy
The consensus is that cognitive therapy can help, by focusing one’s attention on things that takes away the attention from the imprisoning symptoms. But the view is that it does not always work. Graded Exercises can be of a benefit, done tailor-made like the as with a hydrotherapy pool. But exercises have to be mild without demanding exertion on the individual. Patients in Malta are certainly aware of the controversy and that the CBT and GET are not good for ME patients and should be excluded if they are too much for the patient. Like with other countries across the world, patients often, if not always, seem to know more than doctors.
What they'd like to see change
They would like to see comprehensive awareness, addressing the multitude of ME symptoms. Less bureaucracy when it comes to giving free treatment. Those who can work, need to be offered a job from home. Financial support, education to those who care for the sick, and most of all understanding without prejudice. Above all the mission is for more awareness, recognition, sustainability.
Furthermore there's a need for a holistic approach to patients. Doctors well knowledgeable on the matter to give proper guidance. New treatments given a chance for trial in Malta. Government help to buy medication/vitamins and proper diet. Also financial help for daily needs like food and bills. They want to be independent to a certain point, so having work from home can keep some activity and meaning to a monotonous life ( for those who could of course ) without taking away from benefits.
Practical moves to help patients
In terms of practical objectives, there's a few things that patients are looking for including full assessment of patient’s motor ability to establish rate of disability. Having home aid, having the medicine for free. Being recognised as disabled so not having to wait for long time when during a hospital visit. More awareness among health professionals, and understanding of the syndromes that make patients feel worse when maltreated and misunderstood. ME patients could be helped physically and mentally, provide free medication and free physiotherapy. Home help, more availability of free medication and treatment, long term treatment, education for carers, education for health professionals and an increase in the syllabus of ME and FM for university medical students, and more practice first hand as first aiders. Above all they would like to have the authorities understand that they need 24/7 help. They want doctors and authorities to understand what it really is and that it is a life threatening condition that should not be taken lightly.
Feb 2018