Supreme Court of India rules on Condition of Persons Suffering from Chronic Fatigue Syndrome

Highlights:

• The petition arose from the denial of diagnosing the treatment of CFS.
• Diagnosis, treatment and research of patients suffering from CFS is a patient’s fundamental right
• The judgement on a chronic neurological disease like chronic fatigue syndrome by the Supreme Court sets a precedent.

The issue arose in a petition filed by Mr. P Sreenivasa Chakravarthy (Petitioner) claiming to be suffering from a condition called Chronic Fatigue Syndrome or Myalgic Encephalomyelitis// - a condition recognized by the World Health Organization (WHO) as a neurological disease since 1969. The grievance of the petitioner was that though a National Policy for Treatment of Rare Diseases was framed in 2017 and later revised in March 2021, no steps had been taken for diagnosing the treatment of the rare disease from which the person is suffering. The matter was heard by a bench comprising the Chief Justice of India D. Y. Chandrachud and Justice P. S. Narsimha. Petitioner’s seek :

It has been stated that the Ministry of Health and Family Welfare of the Union of India launched a digital portal for crowd funding and voluntary donations for the treatment of patients with rare diseases.

In this backdrop, the petitioner submitted that effective mechanisms for diagnoses, assessment, treatment and research of patients suffering from Chronic Fatigue Syndrome and other rare diseases in India are a patient’s fundamental rights enshrined in the Constitution of India as per Article 14, 21, 39, 41 and 47.

The petitioner also sought directions to open up the center of excellence in all 28 states and 8 union territories of India so that it is approachable for every rare disease patient in India. Finally, the petitioner sought for an issuance of an order directing the center to devise a mechanism to make a wide publicity of rare disease and to educate the various stakeholders so as to find a mechanism of permanent cure for patients suffering from the CFS and other rare diseases in India.

Court’s Order on Chronic Fatigue Syndrome

The Court found that an expert scientific determination was necessary for the prayers raised by the petitioner. Accordingly it held the following :

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 chronic fatigue syndrome. 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.

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References:

1. P. Sreenivasa Chakravarthy V. Union of India - https://www.livelaw.in/pdf_upload/29711202112340343order05-dec-2022-447772.pdf
2. Supreme Court Directs Centre To Examine Means To Improve Conditions Of Persons Suffering From Chronic Fatigue Syndrome.https://www.livelaw.in/top- stories/supreme-court-directs-centre-to-examine-means-to-improve-conditions-of- persons-suffering-from-chronic-fatigue-syndrome-215900

Source-Medindia