Monday, 25 June 2018

Government and HSE: It is time to change the conversation about ME in Ireland

“ME, is incorrectly treated, lacks sufficient funding and is poorly understood by many in the medical profession” 

- Carol Monaghan MP


An account of the ongoing situation for Myalgic Encephalomyelitis (M.E.) patients in the U.K. was witnessed by many across the world from the U.S. to Australia to Pakistan, and right across Europe in the Westminster Hall M.E. Debate on June 21st, 2018. 
MP Carol Monaghan brought this debate into being.

Numerous accounts from MPs about M.E. and its effects on those who suffer it, stressed the points that much more needs to be done to raise recognition, diagnosis, and treatment of this severe illness.

Steve Pound MP said:
“Today is the day, here in June 2018, where finally we started to take (Myalgic) Encephalomyelitis seriously and we stopped condemning people who suffer from this ghastly debilitating disease. Today is the day we said yes, we understand the pain that people suffer, yes, we’re going to do something about it, yes, we respect you, yes, we value you, and yes today we’re going to start investing in diagnosis, analysis and, god-willing, cure.”

There is an urgent need for the Irish Government and HSE to:
1)     commit to a date to have similar talks about the situation of M.E. patients. 
2)      to agree a way forward with no further delay
3)     ‘change the conversation’ about M.E. in Ireland




Please see account of the M.E. Debate below.

___________________________________________________________________________
  • Comments by Carol Monaghan, MP, (SNP, Glasgow NW), and Jim Shannon, former Councillor & Member of the NI Assembly
  • Steven Brine’s speech, Parliamentary Under Secretary for Health & Social Care which includes: Stephen Pound MP passionate speech on the need to improve treatment of children
  • Liz McInnes MP and Carol Monaghan MP spoke of Merryn Croft the youngest person to die from M.E.
  • NICE Guideline Review – ‘if the PACE trial were a drug it would have been banned by now’
The debate also referred to the:
  • a)     problems in accessing benefits in the UK system
  • b)     need for well-funded biomedical research.



UK Members of Parliament debated Myalgic Encephalomyelitis (M.E.) Treatment and Research in Westminster Hall, London, on Thursday June 21st, 2018



Comments by Carol Monaghan, MP, (SNP, Glasgow NW), and Jim Shannon, former Councillor & Member of the NI Assembly

The debate, which was led by Carol Monaghan, MP, (SNP, Glasgow NW) received wide cross-party support with twenty-five MPs present, and with thirteen MPs making contributions. The number of MPs in attendance was seen by all concerned to underline the importance of the debate, and the pressing need for change in healthcare for M.E. patients. There were also several M.E. patients in attendance at the debate. The debate heard numerous accounts from MPs about Myalgic Encephalomyelitis (M.E.) and its effects on those who suffer it, and how much more needs to be done to raise recognition, diagnosis, and treatment of this severe illness.

“ME, is incorrectly treated, lacks sufficient funding and is poorly understood by many in the medical profession” - according to Carol Monaghan MP who has been campaigning in Parliament to change attitudes. She also argued that graded exercise therapy (GET), offered most commonly on the NHS, is often damaging and in need of serious revision. Throughout the debate other MPs cited stories from constituents suffering with M.E. who say that GET has made their illness worse.

Northern Ireland had representation at the debate in Jim Shannon, former councillor, and Member of the Northern Ireland Assembly, who did Northern Ireland M.E. patients proud and made sure that the 7000 patients got representation. He called for M.E. to be included in the medical curriculum, as a result of the evidence the ‘Hope 4 ME & Fibro Northern Ireland’ charity provided.

“This is an emotive issue. Many constituents have contacted me in anger, frustration and hurt as they simply feel that their illness is not understood and that successive Governments and some in the Department of Health and Social Care have shown no desire to gain an understanding—I say that respectfully, and I understand that some might say that healthcare is devolved. That is not the case for everyone, but it is certainly how many of my constituents have said that they feel.” – Jim Shannon

“ME is a chronic fluctuating neurological condition that causes symptoms that physically affect many bodily systems, commonly the nervous and immune systems, and affects an estimated 250,000 adults and children in the UK, as other hon. Members have said—it is not just an illness in adults. Approximately 7,000 people in Northern Ireland and about 17 million people worldwide have ME.” – Jim Shannon

“Specialist services for ME are scarce and under-resourced, as many hon. Members have said. I am ashamed to say that in Northern Ireland, my home nation, there are no services, which makes it all the worse. . . . . . The only way to get the attention and dedication that is needed to treat ME is to ensure that it is correctly classified, which has not happened so far.” – Jim Shannon





Following the three-hour debate in Westminster Hall on M.E., an official transcript was produced that enables us to read exactly what Steve Brine, the parliamentary Under Secretary for Health and Social Care, and other MPs had to say in response to the issues that were raised. The Minister spoke for approximately 24 minutes, and his formal response was followed by a short speech from Carol Monaghan, which closed the debate. For Brine's speech please go to 15:49:06 mins and watch to the end of video.


Steve Brine, Parliamentary Under Secretary for Health and Social Care - link to transcript of his speech, and extracts from that speech below in text.

“As so many have said, the underlying causes of the condition, which for brevity I will call ME, are still poorly understood. There is no one diagnostic test to identify it, and although some people can and do improve and recover, there is currently no cure. That is a hard reality to face. Although the severity of symptoms and therefore the impact vary, ME can lead to poor attendance and affect outcomes at school for young people. I have a constituent in exactly that position with whom I am in regular correspondence—I will not name her, but she knows who she is, and I wish her and her mum well. ME can result in significant or indefinite time off work or job loss in adults; reduction or complete cessation of daily activities, which can lead to isolation and strain within families and the breakdown of marriages; and overall poor quality of life. As my hon. Friend the Member for Stirling (Stephen Kerr) said, it can lead to almost no life for some people and their loved ones.”

“We recognise that people with ME have encountered significant stigma, in part due to the unfavourable media representations of the condition that not only go back to the 1980s but have continued in recent times.”

“My right hon. Friend the Member for New Forest West (Sir Desmond Swayne) made a very good point about mental health; it is totally wrong and insulting to say it is all in the head, but it also goes against the grain of what we are talking about in modern-day healthcare: the parity between mental and physical health. There must be a parity, and to suggest that that somehow lessens it is wrong.”

“The physical impacts of the condition have an impact on mental health, as other hon. Members have said. I am also the Minister with responsibility for cancer, so I speak in lots of debates in Westminster Hall and we talk about the mental health impact of cancer—the hon. Member for Washington and Sunderland West (Mrs Hodgson) knows all about them. A recent example was when we talked about the mental impact of blood cancer. People with ME often report that the legitimacy of their symptoms has been questioned by family, friends, employers, healthcare professionals—yes—and society as a whole. Lest hon. Members did not understand it from my opening remarks, let me clear that Ministers—especially this one—are not among that group of people.”

“As we have heard, suicide is not unheard of. We know that those who experience stigma often also experience discrimination, which has a profound negative effect on their lives. That is unacceptable, so I welcome the debate as a forum to raise awareness of ME and talking about it.”

“Although I understand hon. Members’ points about raising awareness among medical professionals, and as a result of the debate I will redouble my efforts to do that as part of my role as Minister for primary care, all GPs certainly should be aware of ME, and should maintain their clinical knowledge of it and other conditions, as part of their commitment to continuing professional development.”

“It is important that we raise awareness and educate people, including me, about the condition and its impact on people’s lives.”

MP Stephen Pound spoke passionately about the need for improved treatment of children with ME.

“Today is the day, here in June 2018, where finally we started to take (Myalgic) Encephalomyelitis seriously and we stopped condemning people who suffer from this ghastly debilitating disease. Today is the day we said yes, we understand the pain that people suffer, yes, we’re going to do something about it, yes, we respect you, yes, we value you, and yes today we’re going to start investing in diagnosis, analysis and, god-willing, cure.”

   Minister for Health and Social Care, Steve Brine, was asked how the Department for Health is supporting training for medical practitioners on M.E. care and treatment and asked if he would support proper funding for medical research into the diagnosis and treatment of M.E. Mr Brine said the government invests £1.7bn each year into health research, and stated that the National Institute for Health Research and the Medical Research Council would welcome “high-quality” research into “all aspects of M.E. to make a scientific breakthrough”.
He described the need to find a breakthrough as a “matter of good Christian humanity” and promised to help increase the awareness of M.E. with GPs.

Liz McInnes MP and Carol Monaghan MP spoke of Merryn Croft the youngest person to die from M.E.

-    Liz McInnes MP raised the heart-breaking case of Merryn Crofts from Norden, one of only two people to have M.E. stated as the cause of death. She explained that earlier this year, a coroner ruled that 21-year-old Merryn Crofts was the youngest person to die from the illness after a six-year battle with very severe M.E.

Liz McInnes MP said:

“ME is such a misunderstood illness, as the sad case of Merryn Crofts from Norden demonstrates.” “Merryn was totally bedbound; she physically could not get out of bed. She suffered so badly from postural hypotension that she blacked out if placed in a sitting position. She was hypersensitive to noise, light, touch, and movement, and suffered so badly from pain that she could not get out of bed. Merryn was bed-bound for the last three years of her life.” “After speaking with Merryn’s mum Clare and taking part in the Westminster Hall debate today, it’s clear to me that much more needs to be done to tackle ME and to help those who suffer its awful symptoms.” “Among other things, we need to invest more in training for our Doctors, especially General Practitioners who are the clinicians likely to be the first port of call for those suffering with ME – our GPs need to have the skills to be able to recognise the signs & symptoms and to signpost patients to the appropriate specialists.”

Liz McInnes'  Speech Transcript


-        Carol Monaghan MP added: 
“Some people consider M.E. to be a psychological condition, despite the fact that people with M.E. are not allowed to be blood or organ donors. And they called for an end to the stigma and myths surrounding M.E., which at worst, leaves sufferers to endure a tortuous existence.”

These were Merryn’s words that Carol Monaghan MP read out:

“Having Severe ME is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the simplest things away from you, like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors and feeling worse saying no every time someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless and, if I was physically able to type, I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”
_____________________________________________________________________

NICE Guideline Review – ‘if the PACE trial were a drug it would have been banned by now’


-     The NICE guideline review matter was discussed in great detail during the debate and concerns raised about current recommended approaches to management, CBT/GET. It was noted that the NICE review will take some time, that there is a need to ensure the voice of M.E. sufferers is heard, but the idea that the current guideline is in place until 2020 is scary.

It was stressed that there is real harm being caused now by current recommendations - so it is up to the Minister to question whether the current guideline should be suspended now. Many MPs made it clear on Thursday that NICE must remove their current recommendations on GET.
              
“If the PACE Trial were a drug it would be banned by now.”

-     Andrew Selous MP raised the point that there are roughly two and a half times more people with M.E. than with multiple sclerosis, yet there is 20 times more research on multiple sclerosis than on M.E. and, of what little M.E. research there has been, the vast majority has been through psychological and behavioural studies rather than the biomedical approach. Sir Edward Davey MP responded saying that “we still need a lot of research into MS, so it is not one or the other, but given the incidence of M.E., as he rightly says, the case for research into the biomedical aspects is strong”.

-      Sir Edward Davey raised the issue of the need for respect for patients. He said that it seems, from the stories he has read, that some in the medical profession do not appear to respect patients, that they make comments that it is all in people’s minds and that they are making it up. He conveyed that it is no way to talk to adults. Sir Davey pointed out the need to train doctors saying that we need better guidance and better training, so they understand the situation. He said he is worried that we are seeing some pressure to reclassify M.E., which is sending a dangerous signal, and he hopes the Minister will say that the Government are questioning that reclassification and putting it on hold, otherwise, the training for doctors will not happen, the respect for patients will not happen and we will not see the change that our constituents demand.


-        MPs demanded more funding for research into a cruel “death sentence” disease affecting 250,000 people in the UK, and the immediate end to NHS-recommended treatments that are making patients worse. Parliament heard in the three-hour debate of the chronic lack of funding for medical research and how many doctors still don’t know how to diagnose or manage the condition. Politicians said that controversial psychotherapy and exercise therapies recommended by the NHS after a flawed medical trial must stop now because they are making patients worse.

“People living with ME have decades of abuse and neglect to counteract and move past. Parliamentary support is a major step, and while there are still ‘millions missing’ across the world, an agreement that crosses political boundaries is crucial."






Compiled by Moira, edited by Christine, published by Corina. A joint MEAI effort.


TDs & Senator at M.E. Visibility Protest, 10th May 2018

There was great interest and some promises made by a few Government Reps, who attended the 2018 Millions Missing Visibility Event on May 10th outside Leinster House, Kildare Street, Dublin, to help further the cause of ME patients in Ireland. 

1. Roisin Shortall TD Soc Dems with Noreen Murphy (MEAI)
 in front of the M.E. patients' Info Tag display

Those who came out and talked with us: 

Gino Kenny -PBP
Roisin Shortall -Soc Dems
Catherine Murphy -Soc Dems
John Lahart -FF
Robert Troy -FF
Michael Harty - Ind
Seán Barrett -FG
Thomas Pringle -Ind
Joan Collins - Ind
AnneMarie Mc Nally -Soc Dems
Michelle Mulherin Senator (former FG TD)
Eamon Scanlon - FF
Peter Burke -FG
Billy Kelliher -FF
Richard Boyd Barrett -PBP

Eamonn Scanlon TD (FF), Thomas Pringle TD (Ind) and Senator Michelle Mulherin were very supportive attending the event. They listened to ME Advocates Ireland (MEAI) members and attendees talk about M.E. issues and the deliberate neglect of M.E. patients by the HSE. All want to stay in touch. Senator Mulherrin said she will do her best to raise M.E. with the Oireachtas Health Committee.

John Lahart TD (FF) who also attended the event and showed support chatting to M.E. patients, their carers and families, has recently written to say that he has placed a number of Parliamentary Questions on the issue of M.E., and has written directly to the chair of the Oireachtas Health Committee, Michael Harty TD (Ind), requesting a meeting of the committee with ME Advocates Ireland (MEAI). As soon as he has a response he will be back in touch. 
He showed a lot of interest in Severe M.E. patient Noreen Murphy (MEAI) and had a lengthy chat with her and some of her extended family who were present.

Gino Kenny TD (PBP)  who attended the Millions Missing Visibility event gave much of his time talking to many attendees. He also talked to Noreen Murphy (MEAI member, Severe M.E. patient and advocate) at her car outside Leinster House where she had to lie down after she deteriorated from sitting upright in her mobility chair and from the effort of taking part in the event. He remembered her speech about her Severe M.E. that was read out by M.E. patient-advocate Moira Dillon (MEAI) in the AV Room in Leinster House in January, and he was very happy to meet her face to face. He said that he was doing all that he could to help M.E. patients. Many thanks to Gino for your continual support and efforts made in Dail Eireann on behalf of M.E. patients. 

Noreen was full of praise for her local TDs Peter Burke (FG) and Robert Troy (FF) who she said offered support and a listening ear during the protest. First out to Noreen was Robert Troy who tried to do what he could do in the Dail to get some assurance from Health Minister Simon Harris while the protest was taking place outside. He came back out to say he hadn't got anywhere but we are grateful to him for making the effort.

Many many thanks to the unwavering support of Roisin Shortall TD, Catherine Murphy TD, Annemarie Mc Nally TD and Michael Caul (MyNameis Campaign), all members of the Social Democrats Party, who attended the Visibility Protest and listened to patient-advocates talk about the M.E. issues in Ireland that need to be urgently resolved. We are grateful to them all for attending and also for providing attendees with use of the facilities at the Social Democrats office nearby.

Other TDs e.g. Richard Boyd Barrett (PBP), who were busy with party photo-calls for the upcoming Repeal Referendum, made it their business to say hello and listen to some attendees. 

Overall there was a reasonably good attendance by Government Reps at the Visibility Protest. 
Those who responded to email invitations from the hosts, ME Advocates Ireland (MEAI), and many M.E. patient-constituents to come out to meet attendees, showed good interest and hung around chatting and gave of their time. 
Attendance at the Visibility Protest may have been better if Government Representatives had not been so busy with both Repeal Referendum and the Cervical Check Scandal, etc in Leinster House on the day.


2. Noreen Murphy (MEAI)  & family with John Lahart TD FF
putting on blue ribbons provided by Noreen's grandsons for M.E. Awareness

3. Joan Byrne (MEAI) chatting with Joan Collins  TD Independent 
4. Gino Kenny PBP TD with Camilla Cruise (MEAI) and her dad 
5. Michelle Mulherin Senator with Noreen Murphy (MEAI)
6. Seán Barrett TD FG with Marian Flynn, Camilla Cruise (MEAI)
& Gino Kenny TD PBP
7. Joan Byrne (MEAI)  with Roisin Shortall TD Soc Dems 
8. Thomas Pringle TD Independent with Christine Fenton (MEAI)
  • More images of the event can be viewed HERE 
9. Alan Robertson (right) and other visibility event supporter (left)
with Richard Boyd Barrett TD PBP in background
11. Christine Fenton (MEAI), Joan Byrne (MEAI) with Joan Collins TD 

We urge all TD's to take a note of the UK Members of Parliament debate on Myalgic Encephalomyelitis (M.E.): Treatment and Research in Westminster Hall, London, on Thursday June 21st,  2018

There is an urgent need for the Irish Government and HSE to:

  • 1) commit to a date to have similar talks about the situation of ME patients. 
  • 2)  to agree a way forward with no further delay
  • 3) ‘change the conversation’ about ME in Ireland


12. Joan Byrne (MEAI), Michael Harty TD Ind and chair
of the Oireachtas Health Committee, & Moira Dillon (MEAI) Gino Kenny TD PBP
in background talking to Noreen Murphy (MEAI)
 as she rests at her car having deteriorated.