Sunday 11 September 2022

News from the HSE re Clinical Guideline for Myalgic Encephalomyelitis (ME)


The Chief Clinical Officer is supporting the development of a Clinical Guideline for ME


A Clinical Guideline Development Group has been established to develop the Clinical Guideline in Ireland


1)     How this was achieved


2)     What you can do to make a difference: ME Advocates Ireland (MEAI) National ME Survey


3)     HSE letters about the Clinical Guideline:

·       to inform you

·       to inform your Doctor and Health Professionals


1)     How this was achieved


September 2018:

MEAI reported that after an independent investigation resulting in the Culliton/O’Malley Report the HSE received recommendations which were expected to bring change for those with ME by establishing a working group to develop a national guidance document for ME.


May 2019:       An HSE ME Working Group began.

It was interrupted by Covid and did not reconvene after August 2020.


March 2021:   MEAI Advocates continued to receive concerns from across the country.

Joan, Moira and Christine submitted a complaint to the CEO’s office about:


The continuing lack of national Clinical Guidance and knowledgeable care for those with Myalgic Encephalomyelitis, Adult and Paediatric services across all Hospital Groups and Community Health Organisations.


1st April 2021: The Chief Clinical Officer’s (CCO) General Manager acknowledged the complaint


May 2021:       We began a series of comprehensive meetings about our complaint took place across many months.

We approached a number of people who recorded their experiences of the reality of life with ME so that we could share these with the CCO’s office.


We made clear to the CCO’s office that action was needed which resulted in change and improved evidence-based care in both acute and community services for those living with ME so that we receive the quality of care which the National Healthcare Charter commits to.

Whilst it has taken time, MEAI’s complaint and ongoing engagements with the CCO’s office since April 2021, in combination with Parliamentary Questions and letters from other groups in recent months, the result is the CCO has committed to creating a Clinical Guideline for ME using the HSE’s ‘PPPG Framework’ a recognised structured process for writing Clinical Guidelines and policies.


MEAI have repeatedly emphasised that the Clinical Guideline Group and the implementation process should commit to the following principles:


·       That the Clinical Guideline Group will engage with patient representatives and the ME community to:    


o   understand the problems we face

o   work with us to create solutions which will meet our needs in acute and community services.


·       That staff training and information for staff, adults and children with ME will be developed based on the content of the Clinical Guideline.


·       That the process to create and implement the Clinical Guideline to ensure improved Service User experience clearly evidences the patient public partnership at its best.


2)     What you can do to make a difference: MEAI Survey


Many thanks to you who have completed and returned surveys.


·       If you have not returned your survey please make it a priority.


o   Return surveys by post to: MEAI, C Fenton, Derrybeg, Lisserlough, Via Boyle, Co. Sligo, F52 XF65

o   Return electronic surveys to:


·       If you are unable to complete all parts of the survey please:


o   send what you have been able to do

o   write or record the experience which most stands out in your mind and send it to us


All contributions are valuable and will be included in the feedback.


If you would like to request a Survey Pack or have any further queries please email the survey email address at:


contact one of the survey coordinators using the messenger button on the ME Advocates Ireland Facebook page.


Kind Regards,



3)     HSE letters about the Clinical Guideline

·       Letter to inform you 

·       Letter to inform your Doctor and Health Professionals 

Wednesday 7 September 2022

An Assessment of Post-Exertional Neuro-Immune Exhaustion Malaise (PENE) (also referred to as PEM)

Here is a list of symptoms (39) made worse due to physical or cognitive exertion, from Table 4 of the Jason et al 2019 study entitled, ‘Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME)’ where 1534 ME patients responded to questions about PEM

Table 4

1. Reduced stamina and/or functional capacity

2. Physical fatigue
3. Cognitive exhaustion
4. Problems thinking
5. Unrefreshing sleep
6. Muscle pain
7. Insomnia
8. Muscle weakness/instability
9. Temperature dysregulation
10. Flu-like symptoms
11. Aches all over your body
12. Physically fatigued while mentally wired
13. Dizziness
14. Gastro-intestinal problems
15. Headaches
16. Ataxia
17. Increased heart rate/heart palpitations  
18. Weak or stiff neck
19. Joint pain
20. Problems with speech
21. Sore throats
22. Muscle twitching
23. Night sweats and chills
24. Sore eyes
25. Nerve pain  
26. Sore lymph nodes  
27. Nausea  
28. Tinnitus  
29. Trouble breathing  
30. Neurological symptoms  
31. Excessive sleep  
32. Loss of appetite  
33. Migraines  
34. Cardiac pain and/or arrhythmia  
35. Brain twangs  
36. Severe burning sensation all over skin  
37. Paralysis/inability to move  
38. Premenstrual symptoms  
39. Decreased heart rate


Here is the link to the complete study by Jason et al: