Monday, 8 August 2022

Severe ME Remembrance & Understanding Day - August 8th 2022



Understanding Severe Myalgic Encephalomyelitis (ME) in Ireland


 


Image by Greg Crowhurst



The patients in the Severe ME category include those with Severe, Very Severe and Profound ME. People in these categories lie motionless in darkened rooms suffering horrendous never ending symptoms that can make movement, communication, activity and their care impossible. 

Some patients with severe ME are wasting away in bed living a ghastly existence hour by hour; some have to be tube fed, are hypersensitive to an unimaginable degree, so hypersensitive that the slightest wrong movement the carer or any visitor makes can be devastating. 

People with severe ME suffer from extreme all over multi-level pain, multiple sensitivities, periodic transient paralysis, (in some cases it is a cardinal symptom), blood pressure and heart issues, muscle weakness, numbness, cognitive dysfunction, visual difficulties, muscle spasms, gut issues, sleep issues.... their body is in chaos, burning and throbbing in pain. 

The experience of the person with severe ME is not obvious at all -  snapshots, photos, seeing the person when they have a short period of perceived wellness contributes to misunderstanding. The experience of the person with severe ME needs to be learned slowly and understood as much as possible so that appropriate caring of any kind can take place, including medical care. The carer, the healthcare worker, the home supports, the patient's doctor and others have to remember that with severe ME in particular there will always be a post exertional response that has to be considered ahead of any support or medical care.

The cardinal feature of ME is Post Exertional Neuro Immune Exhaustion (PENE) as per the International Consensus Criteria (ICC 2011). PENE occurs very easily in people with Severe ME, it could be as simple as a response to someone entering the patient's bedroom, a response to movement and noise which cannot be tolerated. Or a response to someone's perfume or light coming through the window.

More than sixty distinct symptoms have been documented in Severe Myalgic Encephalomyelitis (ME), several of which are unique to the disease. 



Taking the above mentioned symptoms on board it is impotant that fatigue is not considered a defining nor essential symptom of ME. Fatigue is most definitely not a defining nor essential symptom of Severe ME. Fatigue is entirely the wrong word to associate with any severity of ME, it does not describe the horrendous poisoned state of illness. 


PEM occurs in other illnesses but PENE is unique to ME and is very clearly defined in the ICC. 


 

 


Image by Greg Crowhurst




The situation with Severe Myalgic Encephalomyelitis (ME) in Ireland is that:

  • there are 100s of people with severe ME barely living and without appropriate healthcare
  • there are many lying in bed disabled and unable to move, unable to do something as simple as brushing teeth or getting to the bathroom without assistance
  • there are those who cannot tolerate visitors including carers which makes caring very difficult and leaves the person with ME alone in silence in a darkened room
  • there are some who cannot eat because of gut issues, who cannot tolerate hospitalisation or visiting medics so they go without appropriate care for their medical needs, lose weight and become dangerously malnourished and under weight
  • there are those who when they have to be hospitalised end up with inappropriate care, can be abused and gaslighted by medics who are unaware of the severity of symptoms and unaware of the consequences for the patient to be in a noisy and busy hospital
  • there are no Irish guidelines for Severe ME (or any category of ME) for adults and paediatrics
  • there is a lack of interest by the HSE to adopt rigourous criteria, i.e., the International Consensus Criteria & Primer until Irish guidelines have been developed
  • there's no inclusion of Severe ME in medical teaching (or any category of ME)
  • there's little to zero knowledge among health professionals
  • there are no trained health professionals
  • there's no GP awareness
  • there's no national lead for ME despite the severe, very severe & profound categories
  • there's no clinical care pathway for adults and paediatrics
  • there's no follow on healthcare pathway for children who turn18 if they have received any type of support* from a medic as a child (*most supportive medics have been educated about ME by the parents and other advocates on behalf of the child)
  • there are delays in diagnosis, or there's misdiagnosis, leading to a more severe form of ME
  • there's no information re management and treatment once a person receives a diagnosis
  • there are severe ME patients putting up with abuse, neglect and gaslighting by medics who won't admit to their lack of knowledge and who have no idea of the effects onthe patient with regards to the post exertional response
  • there's difficulty accessing welfare support and other community services due to lack of knowledge & guidelines across CHOs, and due to lack of recognition of ME as a disability.....suffering from severe ME can necessitate a family member, friend or carer to do the paperwork for the person in their care
  • there is lack of consistency across the different CHO areas with regards to how applications for supports for ME patients are managed and the supports awarded
  • there are delays accessing home care supports after patients are awarded supports
  • there is lack of knowledge of the severity of symptoms and the horrendous potential effects of visiting carers and other community workers on the person with severe ME 
  • there is lack of cover when carers cannot attend due to illness/holidays/other, often leaving the person with ME without meals and essential care 
  • there is no support policy for under 65s and supports awarded are at the discretion of the home support team; disability is taken into account but again at the discretion of the support team


Despite Myalgic Encephalomyelitis (ME) affecting thousands of people in Ireland, of which 25% have a severe form and 2% have very severe ME, clinicians lack the knowledge to appropriately diagnose or manage ME. Unfortunately, clinical guidance has been scarce, obsolete, or potentially harmful. Consequently, patients remain undiagnosed, and those with a diagnosis often receive inappropriate treatment.

The above issues listed are not limited and perpetually exist because of the lack of willingness by the HSE to bring relevant stakeholders together to produce guidelines and to equally involve the experts, i.e., the ME patients and patient partners (reps). We need to see an end to the mistreatment and abuse of people with ME, especially those with severe ME, including children who have suffered from similar experiences to adults, those who have been threatened with removal from their families and coerced into damaging treatments.


We need to get recognition and education about ME across all community healthcare services - for patients to be accorded the same basic human rights given to other illnesses. For that to happen ME guidelines must be developed by the HSE, guidelines that truly capture the illness and the issues experienced by people with severe ME.




Image by Wendy Boutillier/Artz Studios






There needs to be a partnership between the HSE and ME patients, or others who represent patients too severe to advocate for themselves.

The public and patient partnership we have experienced in other areas of the HSE has met expectations of patients being involved in policy and organisational decision making, it has shown positive partnership with patients and the public and inclusion in participatory spaces that share decision-making power to inform design and policy, an important process that could is essential to bring about relevant policy for the Myalgic Encephalomyelitis (ME) community in Ireland. 

There has to be shared responsibility, where patient and public representatives, health care professionals, academics, and leaders work in partnership, successfully embracing essential public and patient involvement – a person-centred healthcare culture set up with the purpose of increasing understanding of the patients needs and essential to creating a more responsive policy and greater health equity for people with ME.


We join a public call on the HSE to develop guidelines for adults and children with Myalgic Encephalomyelitis (ME), across all severities, and to include the expert patient voice to ensure inclusion of those with severe ME including very severe and profound ME.

 


Untold morbidity, unspeakable suffering - until we address the glaring holes in our understanding and the forces that prevent us doing so, we will not move forward.








Image by Alison/Alistepha Art








Many thanks to Greg Crowhurst, Wendy Boutillier/Artz Studios, Alison/Alistepha Art, for your images


 

 



Severe ME Understanding and Remembrance Day August 8th 2022

 



Understanding Severe Myalgic Encephalomyelitis 

(ME)




Sofia Mirza
Severe ME Remembrance Day is marked on Sofia's birthday which was on August 8th







-        August 8th is chosen as Severe ME Understanding and Remembrance Day because it is the birthday of Sofia Mirza, a severe ME patient, who died at aged 32 due to medical abuse and ignorance.

 

-        Severe ME is estimated to impact 25% of ME patients.

 

 

-        The Severe ME category includes those with Severe, Very Severe and Profound ME

 

 

-        Sufferers are isolated due to the severity of their symptoms. Leaving the bed, the bedroom and home to seek medical care proves to be extremely difficult and next to impossible because of the effects of disruption, of movement, noise, lights, smells and furthermore because of the being in an environment that is not equipped nor has understanding and knowledge about severe ME to be able to manage the patient.


-        ME and Very Severe ME constitute a major challenge for a patient given the symptoms and severity and lack of appropriate home care, healthcare, and management.

 

-        Severe ME and Very Severe ME constitute a major challenge for a carer given the symptoms and severity, the lack of guidelines, education, knowledge and supports.

 

 

 

Image by Greg Crowhurst




 

Below you will find various links to our blog posts about severe ME - a one stop place for anyone looking for educational and practical information about severe ME including important information about caring and supporting those with severe ME.

 


An overview of Severe and Very Severe ME

https://meadvocatesireland.blogspot.com/2022/05/day-21-myalgic-encephalomyelitis.html

 


Image by Wendy Boutillier/Artz Studios




Symptoms in Severe ME

 https://meadvocatesireland.blogspot.com/2022/05/day-10-myalgic-encephalomyelitis-me.html

 




Image by Greg Crowhurst











Image by Greg Crowhurst



Paralysis in Severe ME

https://meadvocatesireland.blogspot.com/2022/05/day-15-myalgic-encephalomyelitis-me.html


 

 






Management and advice about Severe Paediatric ME

Dr Nigel Speight (UK) offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management.

Image by Wendy Boutillier/Artz Studios



See that information via link here


 

 





Image by Greg Crowhurst


Whitney Dafoe’s account of very severe ME can teach a lot about how someone with severe ME should be cared for: (we recognise that Whitney has family carers who care for Whitney in ways that other carers may not be able to, and that they have tried and tested treatments that not everyone has easy access to or might not suit everyone)


 






Useful Information for People Caring for Someone with Severe and Very Severe ME

https://meadvocatesireland.blogspot.com/2022/05/day-22-myalgic-encephalomyelitis.html


 



Image from Innie Somniac



More about Caring for Severe ME

 https://meadvocatesireland.blogspot.com/2022/05/day-19-myalgic-encephalomyelitis.html

 

 





Image by Greg Crowhurst


 




Important Tools for hospital admission/care setting


Care Setting Tools include

·        Personal Care Plan

·        My Needs Statement

·        Consent To Treatment Statement & Form

 

Other useful Tools

·        International Consensus Primer (ICP)

·        DePaul Symptom & Severity, and PEM Questionnaire

·        Bells Disability Scale

·        Educational Film  - ‘Hospital Admission’

 ·          Care Sheets

 

More useful Tools

·        Emergency Room Info Sheet

·        Letter to a hospital or doctor/consultant’s office to avoid a possible psych referral/ward stay

·        Anesthesia Info for ME Patients

·        AHRQ Addendum 2016 Conclusion

·        ME Research Extracts and Videos about ME


Link to all the above information here





Image by Innie Somniac




More re Caring and Carers via this link


 




Image by Greg Crowhurst




Read about Severe ME awareness from around the world in this excellent August newsletter from ME International











 Many thanks to Greg, Wendy & Innie for your informative images. 

Thanks to Greg for your valuable insight to caring for those with severe ME.

 

 

 

Severe ME Understanding and Remembrance Day August 8th 2022 - We remember Merryn

 


 

In Memory of Merryn Crofts 

 

 

Merryn

 


On Severe ME Remembrance Day we remember Merryn and also honour other people who have lost their lives to this devastating disease and those who are barely living with it.


 

We highlight Merryn Crofts' story in the hope that Merryn’s untimely death is not overlooked and the urgent need for proper recognition of, and research into ME is recognised, and ME no longer trivialised. 
25% of those who suffer ME suffer from Severe/Very Severe ME. They suffer so severely they are bed bound, suffer constant pain, paralysis, sensitivity to light and noise so severe they lie in dark rooms with no sounds, skin sometimes so painful the smallest touch can hurt. 
To address misinformation re Merryn's illness her family, who said it would be impossible to give a true understanding of Merryn’s full story as it is so incredibly complex listed, in no particular order, her most severe ME symptoms:


  • Intestinal failure and a hypersensitive gut which led to her being fed intravenously
  • Severe stomach pain
  • Nerve pain (or neuropathic pain)
  • Body pain including constant burning, itching, crawling, throbbing feeling
  • Unpredictable muscle spasms of limbs, head and body
  • Post Exertional Malaise
  • Painful swelling of hands, feet and face
  • Severe cough
  • Migraine
  • Head pain
  • Ear pain
  • Tinnitus
  • Dizziness
  • Eye pain
  • Visual disturbances
  • Blackouts
  • Loss of proprioception
  • Severe cognitive dysfunction impacting speech, memory, word recall, interpretation, concentration and processing
  • Muscle dysfunction and weakness
  • Nausea and vomiting
  • Periodic paralysis
  • Swallowing difficulties
  • Numbness and pins and needles
  • Loss of temperature control and temperature sensitivity, overheating and shivering
  • Hypersensitivity to noise, light, touch, sound and movement
  • Hypoglycaemia
  • Intolerance to heat and cold
  • POTS
  • Sleep disturbance
  • Urinary and bowel problems requiring catheterisation
  • Breathing problems and air hunger
  • Recurrent infections

It is difficult to comprehend how one person could suffer and endure so many horrenduous severe symptoms. 

Linda Crowhurst, who suffers daily from very severe ME describes severe ME - 

"It is more than torment, more than torture. It is almost completely incomprehensible in its agony it is so vast, so punishing, so pure, so bleak, so empty of life and full of sensations that are beyond endurance." -  




On Severe ME Remembrance & Understanding Day we remember Merryn and put a focus on severe ME. Please see our full blog post where you can read more about Merryn's story via this link or here: -  ME Advocates Ireland (MEAI): Remembering Merryn Crofts

 

 



 

 

 





‘We remember them with sadness that they are no longer here with us

We remember them with frustration that they were not helped

We remember them with anger that they are gone

For we remember

All the hurt

All the denial

All the extremity of pain

All the neglect

All the harm

All the harrowing moments

All the suffering

All the grief

And we weep with gratitude

For their precious lives

For their tremendous personal strength

For their utmost conviction

For their forthrightness in speaking out

For their passion in life

For their compassion to others

In a hostile, empty world.

We remember and give thanks

For who they were

And who they will always be

In our hearts’

~ by Greg Crowhurst~

 

 











Thanks to Merryn's mum Clare and to Merryn's family for the information you have shared about Merryn and for highlighting severe ME. Thanks also for allowing us to share Merryn's story.

 

Tuesday, 7 June 2022

Requesting Rectification of your Personal Medical File held with a private GP/other (plus info re a public doctor)

 

Individuals have a right to correction of their personal data under data protection legislation. This also applies to medical data.

If you have a good relationship with your GP/doctor/nurse/ other you could try to explain and ask that incorrect information on your medical record be changed/deleted.

If for whatever reason you can’t or don’t want to discuss this with your GP/doctor/nurse/other, or have tried to discuss the matter already without success, you can write a Request to rectification letter to the practice. See information about this below.



 





Requesting Rectification to a private GP/other private healthcare provider

 

Step 1.

 

The first step is to send a rectification (correction) request to your GP Surgery/Practice which will go to the practice’s Data protection Officer or passed to another relevant person. Send by email to the GP practice with subject line ‘For the attention of the Data Protection Officer,’ or post to your practice with same on envelope.

 

 

Template letter

The Request to Rectification Letter could be a simple letter e.g.

 

 

Dear Sir/Madam,

In accordance with Data Protection legislation, I seek an amendment of my personal data held by Dr x/Nurse x/other.

I claim that the record/s described below contain/s information relating to my personal data that is inaccurate meaning: incomplete/incorrect/misleading.

The information which I believe is incomplete/incorrect/ misleading (please attach relevant copy of record if you have that) is as

follows:

………………………………………………………………………………..

………………………………………………………………………………..

………………………………………………………………………………..

 

The reasons why I claim the information is incomplete/ incorrect/misleading are:

…………………………………………………………………………………

……………………………………………………………………………………

…………………………………………………………………………………….

 

 

I want the line that says ‘…..’ completely removed/amended to acknowledge my reality/the reality of my illness and situation because ……….

Please amend to say ‘…..’ or ‘no suggestion to replace, please leave blank.’

 

If I don’t hear back from you within 30 days or if the matter has not been rectified to my satisfaction, I will be taking the matter up with the Data Protection Commissioner.

I understand that I have a right to have incorrect information on my medical file amended as per

(1)   Article 5(1)(d) of the General Data Protection Regulation (GDPR) states that: “Personal data shall be … accurate and, where necessary, kept up to date; every reasonable step must be taken to ensure that personal data that are inaccurate, having regard to the purposes for which they are processed, are erased, or rectified without delay.”

And

(2)   Article 16 GDPR states: “The data subject shall have the right to obtain from the data controller without undue delay the rectification of inaccurate personal data concerning him or her. Taking into account the purposes of processing, the data subject shall have the right to have incomplete personal data completed, including by means of providing a supplementary statement.”

 

Yours Sincerely,

 

 


Included in the above: -

You should state in your letter what personal data you believe is incorrect, misleading, or incomplete and what you want changed. You should also provide evidence that will support the changes you request if you can.

If your personal data is incomplete, you have the right to have the data completed. This can be done by providing the supplementary information.

 

It is a good idea to keep a copy of what you send in your request for rectification in case you need to carry out step 2, i.e., complain to the Data Protection Commission so that you can include evidence of your attempt to rectify with your GP/doctor/other.

 

 

Step 2.

What can I do if I am unhappy with the outcome of an access request?

You may be unhappy with the way your request was handled because:

·       There was no response or a delayed response to your access request

·       The response to the request was incomplete

 

If you are not satisfised with the outcome of your rectification request to your GP you can contact the Data Protection Commissioner, outlining the situation. Please send your complaint to email address info@dataprotection.ie  or complete the Data Protection Commissioner webform here

 


How do I make a complaint?

You will be asked to provide evidence to support your complaint. This includes:

·       Evidence of your access request

·       Correspondence between you (or your legal representative) and the data controller and

·       information in support of your belief that the data controller holds incorrect personal information about you

 

 

The Data Protection Commissioner (DPC) is Ireland’s independent authority with responsibility for upholding the right of people in the EU to have their personal data protected. It monitors compliance with GDPR and other data protection legislation and deals with complaints in relation to data protection breaches. The DPC website contains helpful explanations of data protection law.

 

 

Step 3.

The Data Protection Commissioner will get an officer onto your case who will contact you/process your complaint.

 

 

What the right to rectification means in practice will depend on the circumstances of each case and the Data Protection Commission (DPC) examines each case that comes before it on its individual merits.

 

In general, data controllers will be required to take all reasonable steps to ensure the accuracy of personal data, taking account of the circumstances of the case, the nature of the personal data and, in particular, the purposes for which they are processed.

The notion of accuracy has to be interpreted in light of Article 5(1)(d) of the GDPR which states that every reasonable step must be taken to ensure that personal data that are inaccurate, having regard to the purposes for which they are processed, are erased, or rectified without delay.

 

See more here:

- https://www.dataprotection.ie/

 

- https://www.dataprotection.ie/en/dpc-guidance/blogs/examination-right-rectification-complaints

 

 

 

 

 

Requesting rectification to a public GP/doctor other healthcare provider i.e., via the HSE

 

The Data Protection legislation gives you the right to ask to have personal data on a record about you held by the HSE amended, where it can be established that the information is incorrect.

If your personal data is incomplete, you have the right to ask to have data completed, including by means of providing supplementary information.

The right of rectification is restricted in certain circumstances under Section 60 of the Data Protection Act 2018, which provides for restrictions that are necessary for important objectives of public interest, and by Section 43 of the Act which seeks to balance the right of rectification with the right of freedom of expression and information.

 

How do you do this?

You must state in writing what personal data you believe is incorrect, misleading, or incomplete and what you want changed. You should also provide evidence that will support the changes you request.

Alternatively, you should complete the Request for Rectification form and send it to the relevant Deputy Data Protection Officer listed in the contact list on the last page of the form and here

The HSE decision maker may need to contact you if additional information is required.

 

Here is the Request for Rectification form to be completed 

 

 

Can you appeal against the decision?

If you are not satisfied with the decision on your application, you may make a complaint to Data Protection Commission, 21 Fitzwilliam Square South, Dublin 2, D02 RD28, or How to contact us | Data Protection Commissioner