Examine ways to improve conditions of people suffering from Chronic Fatigue Syndrome: SC Directs Centre

New Delhi: The Supreme Court recently directed the Union Ministry of Health and Family Welfare for examining the means for betterment of the conditions of people suffering from Chronic Fatigue Syndrome or Myalgic Encephalomyelitis.

Opining that an "expert scientific determination and policy decision at the appropriate level" was necessary for this purpose, the Apex Court bench comprising the Chief Justice and Justice Pamidighantam Sri Narasimha has directed the Union Health Ministry to take a considered decision bearing on a matter of policy and scientific expertise after due consideration by experts.

It was the grievance of the petitioner that even though a National Policy for Treatment of Rare Diseases was framed back in 2017 and later was revised in March 2021, no steps were taken to diagnose the treatment of the rare disease from which the petitioner was suffering. 

Further the petitioner stated in the plea that the Union Ministry of Health and Family Welfare had launched a digital portal for crowd funding and voluntary donations for the treatment of patients with rare diseases.

Invoking the jurisdiction of the top court under Article 32 of the Constitution, the petitioner further mentioned in the plea that the condition of Chronic Fatigue Syndrome is recognized by the World Health Organization as a neurological disease since 1969.

Filing the plea, the petitioner sought directions from the Apex Court for issuing recommendations on effective mechanism for diagnoses, assessment, treatment and research of patients suffering from Myalgic Encephalomyelitis/chronic fatigue syndrome and other Rare Diseases in India as being part of patient's fundamental rights enshrined in Article 14, 21, 39, 41 and 47 the Constitution of India.

Further, the petitioner requested the bench for issuing directions to the concerned authorities for opening up the Centre of Excellence (treating hospitals) in all the 28 states and 8 union territories so that it is approachable for every rare disease patient in India.

The petitioner also urged the court for directing the authorities to devise a mechanism for making a wide publicity of rare diseases and for educating the various stake holders to find a mechanism of permanent cure for patients suffering from Myalgic Encephalomyelitis or other rare diseases in India, as the Jawaharlal Institute of Postgraduate Medical Education & Research, Puducherry had suggested the petitioner.

Besides, the Court also urged the bench for framing guidelines enforceable in law until suitable legislation is enacted by the State Legislatures/Parliament of India.

Observing that an expert scientific determination was required for the prayers sought in the plea, the bench observed, "Many of the reliefs which the petitioner seeks would require an expert scientific determination and policy decision at the appropriate level on what steps should be taken to ameliorate the condition of persons suffering from the condition."

"We are of the considered view that it would be appropriate if the grievance of the petitioner is examined by the Ministry of Health and Family Welfare of the Union Government so that after due consideration by experts, a considered decision bearing on a matter of policy and scientific expertise can be arrived at. The petitioner would be at liberty to prepare a comprehensive representation and submit it to the Secretary in the Ministry of Health and Family Welfare, together with a copy of this order, so that the matter can be examined expeditiously at the appropriate level," the bench further mentioned in the order.

To read the order, click on the link below:

https://medicaldialogues.in/pdf_upload/supreme-court-chronic-fatigue-syndrome-192999.pdf

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