Review treatment of people with ME in Scotland

What it asks

What the petitioner did first

1. 7 Jun 2018
   Public Petitions Committee

   New Petitions
   1 mention
2. 8 Nov 2018
   Public Petitions Committee

   Continued Petitions
   1 mention
3. 22 Nov 2018
   Public Petitions Committee

   Continued Petitions
   1 mention
4. 24 Jan 2019
   Public Petitions Committee

   Continued Petitions
   1 mention
5. 30 May 2019
   Public Petitions Committee

   Continued Petitions
   1 mention
6. 19 Dec 2019
   Public Petitions Committee

   Continued Petitions
   1 mention
7. 26 Aug 2020
   Public Petitions Committee

   Continued Petitions
   1 mention

1. Scotland1,904 33%
2. England1,006 17.4%
3. United Kingdom908 15.7%
4. United States629 10.9%
5. Australia259 4.5%
6. Canada154 2.7%
7. Netherlands135 2.3%
8. Norway122 2.1%
9. Germany101 1.8%
10. Sweden99 1.7%
11. 41 other countries453 7.9%

1. Ann Forbes 23 Apr 2018
   I fully support this petition .
   I have contacted Carol Monaghan MP's office to inform of this petition (in case she was unaware).
   I hope you are aware of the tremendous contribution
   she made at Committee in Westminster on this important subject .
   In short , if you want to know what I think about the points mentioned below (and beyond) just ask Carol Monaghan MP who is hugely informed .
2. Richard Vallee 25 Apr 2018
   Please end the discrimination against ME patients.
   
   Not a single country has found the courage and will to do so. This is something that will be historical once it happens. Be on the the right side of history.
3. Yvonne Cassidy 25 Apr 2018
   I would just like to be treated like an normal human who is I'll and not have people or doctors looking at you as if you are lazy ...for more funding and understanding of this cruel disease
4. Fiona Culbert 25 Apr 2018
   Compared to England ME CFS support is worse than appalling. I have watched my family members health, education and future be devastated. A fight to be suagnosed, the current NHS Scotland guidance is disregarded. There is no offer of treatment as there are no specialist resources (nor plans for any) in Scotland. Too ill to attend school, my children told repeatedly "no education unless in achool", no tutors, online curricular provision, 14 plus colleges or cute "no isolation" robots for us here. Just forgotten...
5. Caroline Cecil 25 Apr 2018
   Something desperately needs to happen NOW for ME sufferers
   - there is basically nothing for us, no treatment, no support, no empathy
   - it's like we don't exist.
6. Maureen McIntyre 25 Apr 2018
   For me, the top priority by far is funding for biomedical research. We need to know the cause and, hopefully identify effective treatments for M.E. to enable us to return to leading active, productive lives.
7. Louise Ann McAllan 25 Apr 2018
   I was recovering from ME and was pushed into Graded Exercise Therapy. It made me bed bound and still doctors consider me 'difficult' because I refuse to do more of it, when I know it will harm me. We need everything outlined in this petition, we deserve the same level of care and treatment as other diseases.
8. Janet Sylvester 25 Apr 2018
   There is a desperate need to support people with ME in Scotland. The fact that there is only one specialist nurse (in Fife) and no hospital based specialists at all is shocking. The Scottish Government should provide funding to the health boards for specialist nurses in each area (as it does with MND) and provide ring fenced funding for research into this terrible illness that is affecting so many lives. The funding it provides should recognise numbers of people with ME and the huge impact it has on their lives.
9. Nicky Delacey 25 Apr 2018
   Please please please can we have done proper research, support, care and effective treatment for so many people affected by this
10. jacqueline miller 25 Apr 2018
    If you already know it is bad or wrong, and do it anyway, you commit a sin difficult to redress.
11. Jackie Richards 25 Apr 2018
    GPS and other health professionals need to be educated more about treatment and care of ME patients.
12. Helen Love 25 Apr 2018
    My family member has ME and this would benefit her greatly.
13. Gregory Cockrell 25 Apr 2018
    If Scotland wants to be a world leader. Here is your chance. Look after the downtrodden.
14. Carol Ann McGregor 25 Apr 2018
    I have been missing from my life for 25 years. I was bedbound for 7 years and for the rest virtually housebound with a 3 month period I was able to go out regularly. Please look ok at the biomedical evidence via the ME support organisations, revoke the current guidelines on Graded excercise (GET) and Cognitive Behavour Therapy that sees Myalgic encephalomyelitis as a psychosomatic illness and therefore ignores our symptoms. Too many suffers have deteriorated because of them. Please instead fund high quality bio medical research and appropriate treatments that are based on individuals symptoms. I want my life back so I can peruse my dreams. Please help.
15. Karen Shankland 25 Apr 2018
    My family member suffers with ME and I have watched him suffer for many years. I have tried to support him with the emotional challenges of his illness and the very poor response from his GPs and practice nurses in relation to his condition. There are many times they have made him feel he is wasting their time and that there is nothing wrong with him. He has not had good support at all and I have felt genuine despair and concern for him. Even the DWP were awful after he had to be medically retired. ( Thank goodness for an occ health doc knowing all about ME).
    I hope the Scottish Government take this petition seriously and do something that will make a difference.
16. Ann Gammack 25 Apr 2018
    Please take action to help people with this devastating condition so that they are no longer missing from society.
17. Aidan McEvoy 25 Apr 2018
    This affects a member of my family in Dumfries. Her treatment has been inadequate for many many years. A review is the minimum these people deserve.
18. Amanda Hamza 25 Apr 2018
    I have fibromyalgia with chronic fatigue, during my worst I needed help to do everything but I am thankful to be doing well at the moment.
19. Shona Forrester 26 Apr 2018
    Knowing children that are affected by this condition l do hope this petition can begin to make a difference to those in desperate need of help
20. jane Mcnamara 26 Apr 2018
    Despite offering support and advice I ultimately feel as a Gp I am unable to offer patients what they need
    - a secondary care specialist service which is multidisciplinary for diagnosis and management.
21. Arlene Haydock 26 Apr 2018
    I have suffered for years with ME. Been disappointed that there is very little know about this illness and no help provided to deal with the symptoms.
22. Alison Cormack 26 Apr 2018
    I have had ME for 6 years, am registered disabled, unable to work, have to use a wheelchair when outside and not able to look after my children for more than a few hours. At my worst I am reduced to shuffling around the house. There are so many serious and horrible diseases in the world which have medical staff to help them. Having no Dr to go and see is sole destroying.i am living on benefits with no end in sight, there is nothing more I want then to be back at work and to be a useful member of society. I just want to go for a walk.
23. Nancy Wilson 26 Apr 2018
    I have Fibromyalgia ME my life is limited although I can manage it's a fight to stay upright and keep going . I was medically retired I was a Midwife that made me sad but I couldn't work any more .x
24. Mary Ross 26 Apr 2018
    This is a much misunderstood condition and needs more doctors and practitioners to take it seriously. More research and understanding would be a good starting point and give some hope for those suffering
25. cait ni cadlaig 26 Apr 2018
    I have ME I also have Fibromyalgia .The 'fibro' affects me at times more than the ME But at times both kick in and it is excruciating in terms of pain and exhaustion ,Why is there no treatment (up to date) for either .Also people who have the above -as they get on they will also 'collect' other ailments along the way to further disable a person .I have 12 diagnosis including cancer But except for my GP i get hardly any treatment .Most is tried by me as I hear about of various 'treatments' But I am getting worse???
26. Kate Chaplin 26 Apr 2018
    I know someone with ME in Scotland, near Inverness) whose gp doesn't believe him! Intense day and age! With all the ev there is idence there is. And the millions round the world suffering! Please help!
27. Jocelyn Turley 26 Apr 2018
    As an M.E. patient of 9 years (with more severe symptoms & disability in the past 4 years), I understand first hand, the desperate need for greater research, education & more effective treatments for this truly devastating disease. Without these in place, tens of thousands of people in Scotland alone, are continuing to feel neglected and in total despair. Many, like me, are mostly housebound & some are even taking their own lives. So, so much more needs to be done for us all. Many patients are still being treated with great levels of ignorance within the medical profession, with doctors still referring patients for Graded Exercise Therapy (GET), etc. which is potentially extremely harmful for patients and NOT an effective course of action. Please allow for much needed discussions within Parliament in the hope of change! Thank you.
28. Emma edwards 26 Apr 2018
    Please support this
29. Chris Afford 26 Apr 2018
    Support for ME patients is much needed and long overdue. It would be a real statement of intent were the Scottish government to become the first in the world to appropriately fund biomedical research into ME and to provide compassionate care for ME patients
30. Norman Mackenzie 26 Apr 2018
    A member of my family has suffered ME for nearly 30years now & doctors still have no idea how to treat this disabling disease
31. Claire Ryan Heatley 26 Apr 2018
    The old model of treating the patient and the myriad of complex systems involved in this condition in isolation will not address the condition as it needs to be addressed. Using a whole body, root cause , integrative approach and not simply ignoring or chasing symptoms which is what we have at present
32. Patricia Davis 26 Apr 2018
    CBT and GET do not work and do harm to people with ME. Please remove them from treatment guidelines, and provide proper patient support and research funding.
33. Simin Ghatineh 26 Apr 2018
    We need proper biomedical research
34. sue m. 26 Apr 2018
    I know there is no treatment, but support of the same kind as delivered by Marie Curie or Macmillan nurses would be very appropriate.
    Properly trained professionals to come to the sufferer's home, assess needs and sort them out, help with paperwork and claims forms and reduce all the stress and exertion these things cause.
    Without causing distress while there.
    Existing with ME is very hard work, we can't cope with the extra burdens.
    And a public apology from the government on how we've been treated in the past would help to reduce stigma which is another huge and unneccessary burden.
35. Helen Hyland 26 Apr 2018
    Too many lives have been wrecked by this cruel illness. One ME nurse for the whole of Scotland is woeful. These people need support
    - urgently.
36. JOSEPHINE 26 Apr 2018
    I sign this petition for all future M.E sufferers. In the hope that one day, stigma will be replaced with hope of an effective treatment. Sick at 12, now 42: Waiting to start a life... This is, mere existence.
37. Rob Daley 26 Apr 2018
    Present understanding by GPs of the challenges of ME sufferers is disgraceful. Lack of appropriate understanding and wider support mechanisms is adding to pressure on GPs as well as increasing suffering of ME patients and the impact on their families.
38. Mandy Singh 26 Apr 2018
    scotland lead the way!
39. Jo 26 Apr 2018
    This is essential...it took me over 15 years to get a proper M.E diagnosis....and I had to pay for a private consultation..as NHS G.P's would not believe me.
40. Julie 26 Apr 2018
    Help needed all over the UK. Could Scotland be the leading light? Others may follow.
41. Barbara Lees 26 Apr 2018
    I live in England. A family member was born in Scotland.
    I have ME.
    I have Scottish relatives who have friends who have ME.
    I hope that both devolved and UK governments will take notice of the scandalous situation for ME sufferers and their families ie failure to take on board the physical nature of this illness, failure to drop adherence to the PACE trial ideology, failure to offer adequate support to patients, failure to fund biological research commensurate with the number of people affected and the severity of their illness and disability.
42. Barbara Lees 26 Apr 2018
    I would like to see improved care for people with ME in Scotland.
    I would like to see evidence that the government accepts that the PACE trial has been discredited in the light of its many methodological flaws and in the light of the re calculation of its results following recent disclosures of its data.
    I would like to see a medical speciality take on responsibility for this illness and address the accumulating scientific research on its biological underpinning.
    I would like to see funding for research into this illness commensurate with the number of sufferers, the severity of the illness and the degree of disability it causes.
    I would like to see services which are responsive to the needs, including domiciliary services where appropriate.
43. Sylvie Jourdan 26 Apr 2018
    People with M.E need to get real treatment. GET and CBT (based on fake illness beliefs) at best do not work, at worse are very harmful. We need doctors who will treat and look at each symptoms (a lot of us develop or have co-morbid conditions that aren't diagnosed and could be treated (this would help at least, even if the M.E isn't going away). Please help us, fund biomedical research and educate.
44. Esther 26 Apr 2018
    This a terible disease please help us!
45. L.Hunter 26 Apr 2018
    ME-CFS is a terrible ailment and I am completely left to my own devices with it. My GP is so overworked, she doesn't have time to read up on the recent research on this illness, so she is of no help to me. There is no one to turn to for advice.
46. L.Hunter 26 Apr 2018
    My GP is overworked and received no training about ME-CFS at medical school. She does not have the time to read and catch up on the recent research about this ailment. I am left to my own devices, with no medically qualified person to ask for advice. There is no ME-CFS specialist in Scotland, not a single one.
47. Sharon Leitch 26 Apr 2018
    My friends daughter is affected by this awful condition
    - it is heartbreaking to see what she goes through everyday
    - she has a right to an education like every other child and this would be life changing for her and her family
48. Rhona Laing 26 Apr 2018
    People are suffering and nobody cares
49. Jane Moodley 26 Apr 2018
    Please research ME
50. John Grant 26 Apr 2018
    Local dedicated M.E teams in each trust