Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME.
MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey called for the suspension of the GET guideline, suggesting that not doing so risks litigation.
“Never have I felt so heard,” said Sian Leary from Sheffield who has been housebound with ME for the past 5.5 years.
“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,” said MP Stephen Pound, one of the 6 MPs who petitioned for the debate. “Today is the day we said, “Yes we understand the pain 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 and analysis and, god willing, cure”.
Carol Monaghan MP, who had led the petition for the debate, said that Professor Sharpe, one of the authors of the PACE trial, emailed her this week to tell her that her behaviour is “unbecoming of an MP”.
“I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty. [Hon. Members: “Hear, hear!”] If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?”
MP Liz McInnes spoke about how GET had worsened Merryn Croft’s condition. Merryn Croft, 21, died from severe ME.
Health Minister Steve Brine, MP, welcomed the NICE’s decision to undertake a full review of ME guidelines, but avoided taking responsibility saying, “It would be inappropriate and wrong for Ministers to interfere with the process, but I feel sure that NICE will be listening to the debate and taking a keen interest in it.”
[maxbutton id=”16″ url=”https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch” text=”Read the Transcript” ]
The debate was a result of 6 MPs petitioning for a full debate in the House of Commons with support from MPs Carol Monaghan, Nicky Morgan, Stephen Pound, Alex Chalk, Ben Lake, Kerry Mccarthy. #MEAction mobilized over 2,800 constituents to urge 605 MPs to attend the debate. (Thank you to everyone who reached out to their MPs and encouraged others to do the same!)
The debate follows on the heels of 27 cities across the UK joining the global #MillionsMissing protest last month, and months of intense campaigning and actions from #MEAction UK and many charities participating in Forward ME. This past February, we secured a debate on the PACE trial. We also secured signatures from 100 MPs for the Early Day Motion 1247 that called on the House of Commons to acknowledge the detrimental effects of the PACE trial.
We need your help to keep the momentum going. Now more than ever, it’s crucial we have the capacity to sustain and grow the impact of this work. Donate today to our crowdfunding campaign and help us hire our first, on the ground UK coordinator.
Watch the full debate:
NIH Must Not Overlook Evidence of Exercise Harm
Long COVID Exercise study must address safety, efficacy concerns.
35 thoughts on “Westminster Hall debate could be a 'turning of the tide' for ME”
I cried with relief for three hours! I could NOT believe what I was hearing at last …
Thank you to everyone BUT special thanks to amazing Jennifer Brea, without whom this probably wouldn’t have happened! I hope she is recovering well.
Thank you all who have spoken and stood up for all of us who have this awful disease, i have suffered for 16 years now and had people disbelieve that i am ill but luckily had family and some friends who have supported me. I like all of us just want my life back but unfortunately i will never get back the years i have lost.
I wept when i heard the words it’s time we took M.E seriously as it is a devastating debilitating illness, i live in hope of treatment and may be a cure one day.
Thank you to every MP who attended
Brilliant…..its so insidious to live with some illness which is ‘unseen’ by others.
A BIG “Thankyou” to the MP’s & healthcare professionals,etc,etc who are supporting us CFS/ME/FMA Sufferer’s!!…. 🙂
Amazing! Never thought we’d see the day!
Is there a list of MP’s who actually attended the debate. mine did say he was going but I didn’t see him on the broadcast, If he went I will personalty thank him, if he didn’t I send a letter of complaint..
well done guys.
i have suffered fir 27years
The MEpedia page documenting the event is here http://me-pedia.org/wiki/UK_Parliament_Grand_Committee_Room_debate_21st_June_2018
Can non-UK residents take part in sending a thank you letter to the MPs?
I followed the link to your form and submitted a comment. It didn’t give me the opportunity to tick MPs names though, and I assume has just sent the comment to all who attended?
This debate and the support of the MPs made me and my son, who has had ME for 18 years, cry. Finally people are showing a deep understanding of the condition and shouting out for more research, better symptom treatment by the NHS and a more compassionate approach from the DWP.
Thank you so much for this debate. I have been waiting 37 years for somthing like this, which is only a beginning, and too late for long term ME sufferers like myself and my three desparately ill friends who killed themselves. I have lost my entire working life and endured copious lies and insults from the medical profession ,which they made with impunity, which deprived me of benefits and destroyed my family who believed what the medics told them ( I was putting it on) rather that their desperately ill, bedridden, family member. I am disapointed that yet more money is being wasted on pointless so called research in the psychology department of Bath University . As Carol Monaghan said ‘ it is not a psychology department that needs to be doing research, but a medicine or biomedical sciences department.’ I do hope that biomedical research into ME will very soon receive generous funding. Thanks once again for this debate.
I understand your pain. My daughter has suffered with this illness for at least 28 years and my son has it in a more mild form, but it has still interfered with his ability to work in the profession he chose. My daughter has never worked and cannot do very much with her life. It has been outrageous the way they have both been dismissed by some medics and my son was denied benefits. I once heard a specialist on the radio say there can be a genetic link to this illness and this could be why they have both suffered with it.
So sorry to hear about the suffering in your family. I do hope that your son and daughter find a way to improve their health. Good luck to you all.
At long last, hopefully some progress & not another “false dawn” please! Much love & gratitude to all involved, especially Jen Brea. Speedy recovery to her, from her recent operation X
I am so greatful all parties came together to support Everyone struggling with this illness. It was done with dignity and respect to everyone with ME. Let us hope this is a new era for our children.
A huge thank you to those people who spoke in the debate. I watched through the tears and heart break as 38 years of M.E. , virul onset, and therefore so much disrespect, abuse and cruelty were brought into light, so much I’d put behind me in order to find happiness within myself.
Also a huge thankyou to Jennifer Brea for the enormity of her efforts, words can not convey the gratitude.
I have had ME and fibromyalgia for 20 years and lost the job I loved as a carer. It was triggered by multiple Hepatitis B vaccinations which were required for my job but didnt take. I am 80% housebound.
My GP was very understanding but could not help. Thank you to all those MPs who attended the debate.
Please help us by funding research. I am not depressed I remain very possitive and hopeful that the medical profession will wake up.
My daughter has suffered dreadfully for more than 20 years , my heart breaks for her. The ignorance of those who haven’t suffered or dismissed ME cannot or will not believe. God forgive them because they know not What they do.
True,the selfish pigs!!… 🙂
Thank you so much to all MPs and professional s involved in the debate and in the background.
I’ve suffered since I was 16 but only diagnosed with fibromyalgia and ME last year. I am now 48. Currently in the ignorance battle with NHS and DWP which is making me more ill. I have lost everything throughout my life because of the ignorance and lack of knowledge and resources. The Government need to step up and fund the biomedical Research surely now? How can it still be ignored? At least do this for the next future generations. Stop the PACE treatments now not in 2020! How many more patients will suffer by then? At least warnings the GPs as suggested.
Thank you again
There is a cure for some sufferers but as pharmaceutical companies cannot make money from it, sadly it doesn’t get much attention. Look into the Perrin technique. I’m an M.E. sufferer and only recently heard about it. It’s science based and has helped so many people recover or at least relieve most or some symptoms.
Thanks to the MP’s for waking up to M.E….. ATOS/PIP’s needs sorting out desperately… I took ill in ’98 and was diagnosed in 2000 at St James, Leeds/Seacroft…. I was on incapacity benefit, but my money was stopped in 2013 when I lost my appeal… I have since then been living on my DLA lower rate mobility which is around £22 a week…. That’s nearly 5 yrs on £22 a week… When they change me over to Pip’s, I’m dreading it…. If I loose, i’m stuffed… and will probably die.
Karen, please find an advocate to help you fill in benefits forms – they have made all the difference to me, and they know what the DWP are looking for. Ask at your local citizens advice bureau. X
Hi Karen, I know that you’re not looking for pity but I just wanted to say how sorry I am
about the appalling lack of disability money you have. Mostly tho’ pls don’t be afraid of PIP’s & go for it ASAP. I was “terrified”, hence it took me forever to fill the form in but actually it wasn’t so bad. My GP insisted that I was interviewed at home (they no longer offer that option on the form so I phoned them & told them I couldn’t get to their office. With my GP’s backing they had no choice but to home visit. I was cross interrogated by a young ambulance worker who just wanted extra money basically. I was awarded £75 p.wk. Some idiot in an office claimed I couldn’t have anything for brain fog, mental ability etc ‘cos I could watch TV, read papers & go on FB never mind the depression this illness has given me. So pls “go for it” as £75 is so much better than £25!
You mentioned The Perrin Technique which I’ve been considering.
You also mentioned that people have recovered or had symptoms reduced by it. Where did u get yr info on the latter pls?
And thank you so much to the MP’s that are helping us. We “desperately” need you!
I’m beyond relieved to see movement happening, after suffering from M.E since 1984. Living only on DLA since December 2015 is pretty hard, since my ESA was stopped by the DWP. I’m mostly housebound and bedbound now. Money couldn’t do everything, like cure the M.E, but at least I wasn’t waking up distressed from the thought of the local council taking me to court over the full charge of council tax, after ESA was stopped. They charge me full rent, too, all out of my DLA, which is supposed to be for supporting my disability. Feels like they want to break me.
This is a big thank you for debating the ME crisis. Carol Monaghan must receive the highest praise for taking on this long overlooked matter. Personally I have never suffered from ME but I have a member of family who does and it is debilitating to say the least. Thank you too the MP’s who supported this debate and the gusto with which they made their points known. Indeed this is a big step forward.
thanku this is great news , I could not focus on the treatment anyway and am interested to hear that others don’t find it helpful
Thank you so much to all the MPs who are supporting us.
It was so heartfelt listening to the debate and having it being described so accurately.
Hopefully now we will start being believed.
My daughter who is now 15, has had 3 cycles of CBT treatment based at the CFS clinic at South London and Maudesley (SLaM) affiliated with KCH, the originators of the PACE trial. She started the treatment in 2015, age 12. She has just completed her final review. She has a big wad of paperwork to complete. The exact same set of paperwork she was required to complete 3 months ago at follow up and 3 months before at the end of her sessions. It’s very disheartening. The paperwork is intended to indicate an improvement in symptoms. I am thankful that there has been an improvement in her symptoms but credit this as much to an adaptation in our lifestyle as to any tools given by CBT therapy. She does not attend school, has limited her study to 2 GCSEs and has a limited social life. I have given up work in the daytime and just work 2 evenings a week. I am thankful that I can do this, as I can make sure she is awake during the day, following some routine and getting nutritious meals.
The onus of the therapy was always on the importance of changing her mindset and ignoring her symptoms which exercise ‘would not hurt or worsen’. She tried so hard to comply, really wanting to go back to school but after wholehearted attempts to do so, she has not managed to. I should be forcing her to get up now, as I do every morning but she is exhausted and it is draining for both of us. This week she has attended an ultrasound appointment to determine whether her extreme period pain is caused by endometriosis. I believe the extreme pain she suffers is linked the debilitating effect of CFS. She has also visited a provision for young people who are unable to attend mainstream school. It was disappointing. She will not be able to access it as it’s too far and her energy would be dissipated by the effort of getting there within the time window. She has 3 kind brothers ( the oldest of whom has Fibromyalgia which limits his work life) but as there lives move on, she remains behind.
I hope for her recovery and she is stable within a limited energy envelope. Her CBT therapist, who has published a manual on CBT for recovery specifically aimed at young people, seems very sincere and sure of her approach but I am very glad that the current NICE guidelines are being debated. I noticed at our final visit that the name of the clinic has changed. It is now called the ‘Persistent Physical Symptoms Research and Treatment Unit’ instead of the ‘CFS Research and Treatment Unit- a change of remit, anticipating the change in guidelines? All but the name remains the same!
Throughout my daughter’s treatment I have felt very conflicted. I was advised to adopt a ‘tough love’ approach, making my daughter get up and get going however she felt. The debate focuses on GET. This was informally included in her therapy, the emphasis being on walking and increasing walking incrementally. In real terms, I would say, my daughter is managing her illness by living a restricted life. I do not know what the future holds for her. I guess she will continue her education by trying to fund online GCSEs and I hope she will be able to hold onto her dreams.
I am a 56 year-old with ME/CFS. As a young person, I was active and athletic, but experienced a mild form of ME/CFS. After challenging life experiences, for example, a ruptured appendix just after my daughter was born by C-Section, ME/CFS has worsened. Every time I exercise, my symptoms worsen. I am thankful the medical community is now recognizing that graduated exercise is not helpful. Being very careful about activity, and an extremely restricted diet with no sugar, grains, dairy, eggs, corn, soy and processed foods is the only thing that helps my symptoms.
Rule out ALPHA GAL ALLERGY BLOOD TEST PANEL a delayed Allergy reaction all animal products it is also in everything that surrounds you
Been there done all of that & understand Politicians or even Lobbyist will promise the Moon they will do absolutely nothing & if they do they will get Peanuts…Also, understand there are several illnesses involved in ME/CFS including EDS so the Budgets for Research have been false all along it is actually
Higher but still Peanuts…Do not have Faith in Government Corporations they all care about themselves & how Rich they can become while in Office…I have done all the Government stuff in Canada numerous times Minister of Health & Prime Minister who I know personally they did nothing,
the only thing they do is send out Generic useless letters in response with their fancy Corporation Logos…Check yourselves for the Alpha-Gal Meat Allergy
– Thank you MP’s SO MUCH for attending the Thursday, 21st June Westminster Hall debate on ME treatment and research,from myself & other sufferers in west Hull… 🙂
Shall we tell Mrs May Our feelings on http://www.number10.gov.uk ????
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