Raise awareness for chronic illness in Hampstead and Kilburn

Raise awareness for chronic illness in Hampstead and Kilburn

The Issue

I am a teenage girl that has suffered from CFS/ME for 2 and a half years. I was a healthy and active 15 year old, who enjoyed school and took part in many extra curricular activities such as acting, running and painting as well as maintaining an active social life. Then in July 2013 I contracted glandular fever and afterwards my health rapidly declined and my school attendance dropped to below 40% whilst taking my GCSEs. I tried GET with the NHS but this did not help and I had to drop out of education all together in October 2014. I was soon bed bound 90% of the time with very severe headaches so I couldn't even leave the house or watch TV. My health however did significantly improve in spring of this year and despite an unfortunate relapse this autumn through the support of my practitioner I now believe I can see a way forward to slowly regain my health for good. Over the past few years I have been supported massively by my friends and family but I still find myself constantly having to explain what CFS/ME is to many people I meet. Many people try to empathise but if they have heard of it quite a lot of people believe it is 'simply feeling a bit tired' or 'can't be that bad' and some even shockingly believe it isn't a real health issue at all and is simply exaggerated or fabricated. CFS/ME is a neurological condition that affects every system in your body and can leave extreme sufferers with no life left at all. Even at a milder level it is a constant mental and physical strain with symptoms including brain fog, severe migraines, lack of muscular function and intense chronic pain. Luckily, there are many fantastic new and exciting opportunities for people to get better and as medical research into neurological patterns develops it seems there is now a light at the end of the tunnel for ME sufferers. But getting better requires an insane amount of mental strength and determination and varies dramatically on each person- without the right support it seems there can be no way out. There has been a dramatic increase in awareness for mental health issues in 2015 to help finally challenge the stigma against depression and anxiety which finally led to Jeremy Corbyn appointing a Shadow Minister to Mental Health (Luciana Berger.) I am thrilled with this development and would love nothing more than to see the same awareness being raised for chronic conditions such as CFS/ME, chronic pain, MS and Fibromyalgia. This petition is directed at my local MP Tulip Siddiq to encourage her to find a way forward to promote awareness of chronic illness in Hampstead & Kilburn to help challenge the stigma and help those suffering feel less isolated and ignored. Eventually I would love to see this issue raised in Parliament and perhaps ask Health Secretary Jeremy Hunt what he should be doing to tackle the myths around chronic illness hands on. Thank you so much and if you know anybody with CFS/ME or suffer yourself please know that you are not alone and are valued in society.
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Cherry EMPetition Starter

Victory

This petition made change with 59 supporters!

The Issue

I am a teenage girl that has suffered from CFS/ME for 2 and a half years. I was a healthy and active 15 year old, who enjoyed school and took part in many extra curricular activities such as acting, running and painting as well as maintaining an active social life. Then in July 2013 I contracted glandular fever and afterwards my health rapidly declined and my school attendance dropped to below 40% whilst taking my GCSEs. I tried GET with the NHS but this did not help and I had to drop out of education all together in October 2014. I was soon bed bound 90% of the time with very severe headaches so I couldn't even leave the house or watch TV. My health however did significantly improve in spring of this year and despite an unfortunate relapse this autumn through the support of my practitioner I now believe I can see a way forward to slowly regain my health for good. Over the past few years I have been supported massively by my friends and family but I still find myself constantly having to explain what CFS/ME is to many people I meet. Many people try to empathise but if they have heard of it quite a lot of people believe it is 'simply feeling a bit tired' or 'can't be that bad' and some even shockingly believe it isn't a real health issue at all and is simply exaggerated or fabricated. CFS/ME is a neurological condition that affects every system in your body and can leave extreme sufferers with no life left at all. Even at a milder level it is a constant mental and physical strain with symptoms including brain fog, severe migraines, lack of muscular function and intense chronic pain. Luckily, there are many fantastic new and exciting opportunities for people to get better and as medical research into neurological patterns develops it seems there is now a light at the end of the tunnel for ME sufferers. But getting better requires an insane amount of mental strength and determination and varies dramatically on each person- without the right support it seems there can be no way out. There has been a dramatic increase in awareness for mental health issues in 2015 to help finally challenge the stigma against depression and anxiety which finally led to Jeremy Corbyn appointing a Shadow Minister to Mental Health (Luciana Berger.) I am thrilled with this development and would love nothing more than to see the same awareness being raised for chronic conditions such as CFS/ME, chronic pain, MS and Fibromyalgia. This petition is directed at my local MP Tulip Siddiq to encourage her to find a way forward to promote awareness of chronic illness in Hampstead & Kilburn to help challenge the stigma and help those suffering feel less isolated and ignored. Eventually I would love to see this issue raised in Parliament and perhaps ask Health Secretary Jeremy Hunt what he should be doing to tackle the myths around chronic illness hands on. Thank you so much and if you know anybody with CFS/ME or suffer yourself please know that you are not alone and are valued in society.
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Cherry EMPetition Starter

The Decision Makers

Tulip Siddiq
Member of Parliament for Hampstead and Kilburn
Responded
Thank you very much for taking the time to draw this important issue to my attention. An estimated 250,000 people in the UK have ME/CFS. As Cherry highlights in her very moving letter, life for many of these people can be a daily struggle. In the worst cases, ME/CFS can leave people unable to carry out many basic day-to-day tasks, and even those with more moderate forms of the condition will face chronic problems. I appreciate that recovery is very rare, and in the vast majority of cases people’s conditions fluctuate throughout their lives. Just as with many other chronic conditions, there is much stigma and lack of understanding surrounding ME/CFS and I am very sorry to read that some people have told Cherry she does not have a “real” illness. I agree that much more needs to be done by all arms of Government – centrally, locally and in our NHS – to raise awareness of how chronic conditions can affect people, and ensure that they have access to the best possible treatment available. I am always happy to make representations on behalf of constituents to any and all issues they raise, and following on from this petition, I have decided to do two things. Firstly, as Cherry requests I have written to Health Secretary Jeremy Hunt MP to draw his attention to the need to raise awareness about ME/CFS, and other chronic conditions, and to promote good practice in treatment. The National Institute for Health and Care Excellence (NICE) has set out strong guidelines for NHS practitioners in the treatment of ME/CFS, and I ask the Health Secretary to ensure these guidelines are being followed. I also ask him to ensure that enough state funding is provided to invest in research on the treatment of ME/CFS. Secondly, I have also written a letter to the Work and Pensions Secretary Iain Duncan-Smith MP calling on him to improve the fitness-to-work assessments regime for people with conditions like ME/CFS. I know that the ME Association has been very critical of the Government’s “Work Capability Assessments” (WCA) regime, which is used to assess whether people should claim out-of-work disability benefits. People with ME/CFS often have highly fluctuating, cognitive conditions, and they feel that the WCA regime fails to account for this. The tragic consequence is that many individuals with ME/CFS are wrongly declared “fit to work.” I have written to the Secretary of State to ask that he address these concerns. If you would like to stay updated on the work I do in this area, please do not hesitate to email me at tulip@tulipsiddiq.com and I will be sure to pass over any replies I receive from the Government. Thank you again for signing this petition, and please do not hesitate to get in touch should you have any further queries, issues or suggestions for further work you would like me to do on your behalf. Best wishes, Tulip Siddiq MP Member of Parliament for Hampstead and Kilburn
Tulip Siddiq MP
Tulip Siddiq MP
Labour MP for Hampstead and Kilburn

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Petition created on 18 December 2015