Specific adjustments for ME/CFS or long COVID symptoms

Specific adjustments for ME/CFS or long COVID symptoms

We have provided a table of potential adjustments, next to the symptoms that are common in ME/CFS and long COVID. We encourage you to explore the suggestions with your child or young person and their doctor, and take it to your school to help with completing an ILP. There may be other adjustments that may be medically necessary, or that are identified by you, your child or young person, their doctor or the school. 

When experiencing PEM, further adjustments may be necessary. It is important to be flexible and keep lines of communication open. 

If weather is hot or humid, the school is happy for my daughter to stay inside with some friends during breaks – Michelle

Table 1. Specific adjustments 

Symptom 

Adjustment 

PEM: loss of physical and mental stamina, symptoms made worse by physical or cognitive exertion 

or  

Orthostatic intolerance: dizziness or weakness when standing 

or  

Fatigue: persistent, marked fatigue that substantially reduces activity level 

  • Regular rest breaks when needed:  
  • Lying down with feet elevated 
  • Somewhere quiet and cool 
  • Can be during or between classes, depending on needs 
  • Reduce subject load  
  • Exemption from participation in physical activity program, or limited participation with documented adjustments  
  • Reduce or remove the need to stand in line 
  • Exemption from assemblies  
  • Reduce walking distance and avoid stairs, for example, schedule classes on the ground floor if there is no lift 
  • Reduce load carried in schoolbag, for example, an extra set of textbooks in classroom or at home 
  • Transport between different campus locations to reduce walking distance 
  • Non-uniform compression wear allowed 
  • Flexible timetabling 
  • Teacher breaks tasks into smaller chunks that can be completed in sequence 
  • Telepresence robot in classroom 
  • Use of Teams/Zoom inclusion when the student is well enough to join in from home 
  • Exemption from assignments that aren’t related to developing critical skills 
  • Focus on studying one or two subjects at a time 
  • Avoid scheduling school attendance on consecutive days 
  • Make an extended Variable Progression Plan, for example, doing senior over three years, instead of two 
  • Home tutoring to augment limited class time 
  • All schooling at home 
  • Exam time scheduled at best time of day (such as in the morning or afternoon only) 

A long recovery period from exertion: takes more than 24 hours to recover to pre-exertion activity level 

Sleep disturbance: non-restorative sleep, insomnia, hypersomnia 

  • Later start to class 
  • Finish class earlier in the day 
  • Sleep during the day in nurse’s office 
  • Exams and tests scheduled around the most alert period of the day, for example, in the morning 
  • Exam and tests supervised from home 

Pain: muscles, joints headaches 

  • Assistive technology for everyday activities, for example, voice recording, voice to text 
  • Regular movement breaks in class 
  • Reduce load carried in schoolbag, for example, an extra set of text books in the classroom or at home 
  • Regular exam breaks  
  • Assistive technology during exams, for example, scribing or using a computer, instead of handwriting 
  • Allow sitting as comfortable, for example, feet tucked up on chair, frequently changing position 

Memory disturbance: poor short-term memory 

  • Assistive technology for everyday activities, for example, voice recording, voice to text 
  • Provide classroom notes before the lesson 
  • Make an extended Variable Progression Plan, for example, doing senior over three years, instead of two 
  • Reduce information overload by focusing on key concepts for understanding 
  • Break tasks into smaller chunks that can be completed in sequence 
  • Exemption from assignments that aren’t related to developing critical skills 
  • Focus on studying one or two subjects at a time 
  • Give prior notice when asking questions, allow extra time to generate and format answers 
  • Check with the student at regular intervals and help redirect back on the task as necessary 
  • Provide checklists 
  • Limit multi-tasking or giving two or three step requests 
  • Use the same strategies consistently, rather than providing multiple ways to do things 
  • Reduce exams and assignments to essential components 
  • Home assessments with supervision 
  • Bed provided in exam for lying flat in rest breaks 
  • Extensive rest breaks  
  • Exam split over two days 
  • Oral exams sitting or lying down, not standing, and one assessor, not the whole class or a panel 

Confusion and difficulty concentrating 

  • Additional rest breaks during exams  
  • Extra time for exams  
  • Automatic two-week extension for assignments 
  • Noise cancelling headphones 

Difficulty retrieving words or saying the wrong word 

  • Provide extra time to complete tasks 
  • Avoid putting the student on the spot 

Gastrointestinal disturbance: diarrhoea, IBS 

  • No permission required to go to the toilet during class 

Heat or cold intolerance, or erratic changes in body temperature  

  • Class in airconditioned rooms only for warmer days, heated rooms only for cooler days 
  • Allowed to stay inside with friends on warmer or cooler days  
  • Allowed to access water a bottle in class 
  • Adjustment to uniform requirements (for example, not required to wear a blazer on warmer days)  
  • Ensure adequate heating in classroom 
  • Ensure adequate cooling in classroom 
  • Study from home when the temperature is outside of the tolerated zone 
  • Alterations to school uniform allowed 

Sensitive to light, noise or odours 

  • Noise cancelling headphones 
  • Sunglasses indoors 
  • Classroom is away from cleaning products 
  • Exemption from science experiments using chemicals, or art classes with paint and glue fumes  
  • Other people asked to not wear scented products 

Other adjustments not listed 

  • Snacks and drink allowed during class 

Other medical supports not listed 

 

Functional physical hours/mins 

 

Functional cognitive hours/mins 

 

Can sit in a chair for hours/mins before the need to walk or lie down 

 

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