ME/CFS Variants in Lithuania

[Audio] This presentation describes 4 Variants in Lithuania of disability caused by M E C F S symptoms. Variant A, with Ay standing for Acceptable, According to the Standard. Variant B, with B standing for a Bad and Unsatisfactory Situation. There is also Variant C, with C standing for Catastrophic and Cruel, where people are told they are healthy although severely disabled. And also Variant D, with D standing for Doubly Cruel, where people are told they are healthy and must undergo a comorbidity treatment that worsens their disability..

[Audio] Speaking about Variant A, it is believed that patients with M E C F S receive medical attention and social services according to nice guidelines. However, in Lithuania there is no questionnaire for measuring this disability..

[Audio] Speaking about Variant B, patients with M E C F S do not receive enough medical attention and social services. However, during this presentation we will not be speaking about the deficiencies of the officially recognised Variants A and B.

[Audio] We will be focusing only on its Variants C and D. In Lithuania, Variant C is not recognized as M E C F S. Therefore, here it represents people experiencing a phenomenon, with M E C F S symptoms. People are told they are healthy, despite being housebound and severely disabled. They have to pay for living expenses, food, et cetera, but since they cannot work, they do not have enough money to survive. They lack the strength to protest against the fact that they are denied their civil rights and personal assistance..

[Audio] Variant D also refers to people who experience a phenomenon with M E C F S symptoms. Some severely disabled people are more likely to survive, due to the fact that they receive a diagnosis of a comorbidity, that allows them to receive financial and social assistance, to meet their basic needs, at the cost of agreeing to comorbidity treatments, which increase their disability levels..

[Audio] The government requirements for assistance are that people have undergone psychological treatment, have undergone hospitalization, have provided data on ineffective treatments, and have provided proof of physical dysfunction..

[Audio] When we talk about psychological treatment, there are false claims about successful treatments for Variant D Lithuanian psychiatrists say: "We trust our neurology specialists, who proved to us that you are healthy, so ignore your symptoms, use our mind-changing techniques and drugs, and you will be healed." However, 'Cognitive Behavioral Therapy' has not been helpful all over the world for people with M E C F S symptoms. It has not helped them, for example to get to the food store or institutions. Lithuanian psychiatric doctors, who say they healed their patients, should come forward and speak internationally, and share their healing successes..

[Audio] Institutions require people with the Variants C and D to contact them, even if they have no strength to call them, to use their computer, et cetera, or to travel to their offices. Although people are severely disabled, they are expected to get food without assistance. They cannot perform these tasks, and need someone to assist them. Psychiatrists say, that hospitalisation of the people with Variant D, would make it possible for them to get to the food store or institutions afterwards, but this is not happening..

[Audio] Next, the government, or anyone that can provide help, asks for data. The State requires submission of legal claims, before it can do anything to make sure citizens get support to get to the store or institutions, if they are bed or housebound. However, we are talking about the Variant C and D sufferers. Besides the fact that these sufferers have too little energy to file legal claims, they are also told that they do not have disabling symptoms, which they actually do. Variants C and D are recognized as M E C F S in other countries, but not in Lithuania. For example, in 2020 the EU published a Resolution with data on M E C F S, indicating that medically undiagnosable Variants C and D cause severe disability levels, and that there is an urgent need for governmental action. The European M E Alliance, 18 countries, published a Survey of 11000 M E C F S patients, 21 countries, who reported severe disability levels and huge unmet needs..

[Audio] Talking about proof of physical dysfunction, and low energy, a mitochondrial dysfunction in energy production leaves people severely disabled. They cannot make phone calls, use their computer, or travel to the store or institutions. Lithuanians with this disability cannot get assistance, because they must first provide the authorities with proof of their physical dysfunction, although it is well known, that until now, no Lithuanian has ever been provided with such proof. However, in Europe and the rest of the world, there already exists a huge amount of published data on M E C F S symptoms, which are the same as medically undiagnosable Variants C and D..

[Audio] A summary of the current situation worldwide is that: Undertaking psychological treatment did not provide a cure. Undergoing hospitalisation did not provide a cure. Providing data on ineffective treatments is impossible, for many reasons, one of them being severe disability. Proof of physical dysfunction sometimes takes decades..

[Audio] That is why Lithuania should provide a national contact person and information on what should be done for Lithuanians, who say they have the severely disabling Variants C and D They experience the same symptoms as people for whom M E C F S is recognised as a severe disability all over the world. The country could mobilize its resources to help these disabled people using the Lithuanian model for providing prompt help to Ukrainian refugees, and ask the Lithuanian moral authorities for leadership in providing ethical recommendations..