What M.E? An update
by John Darvall
Since Naomi and her family shared her story and her video together with the publishing of my blog on ME I have been astounded by the response. And shocked. And heartbroken. I have also learned that a very good friend of mine also lives with a mild form of ME and I’ve known them for 10 years. That is two people close to me who have ME. Coincidence or a painful reality? Why didn’t I know? How many more?
If you can take the time to read some of the comments to my original blog you may feel the same too. What has become clear to me is there is a whole world, more than just the potentially under estimate of 250,000 people in the UK, living with ME. Some of the comments and stories shared are uplifting, others may make you cry. The biggest issue is ignorance and belief in ME, and I include myself in this. To those who have criticised my blog thank you as you are right. I have a lot to learn.
As a journalist, having talked, seen and listened to those with ME, I will do more to learn, educate and explore what can be done. In the coming weeks on the BBC radio programme I am privileged to do you will hear from those raising money to help diagnose, treat and maybe even cure ME. You will also hear from more from those who live with ME and from experts in pain management, where I hope they will take calls from anyone listening. I will let you know when all this is happening.
If there is something, anything else you feel I can do then post it on here. All ideas and insights will be considered by me and my very small but brilliant programme production team.
Thank you for sharing your stories and I will try to do what I can to raise the profile, expose and tell the story of ME with your help and support.
Not Mid Morning Matters 
Thank you for writing about M.E.-every advocate helps and your writing is brilliant!
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Thank you – so much . . . .
Yes Yes Yes ignorance is the very worst thing I think
People don’t want to know. We get abandoned by friends. Or even possibly disbelieved. We lose everything.
No help from the medical profession – or very little. A lot of harm is done by the way they treat us.
I can hardly believe that I’m 55 now. And started feeling unwell since my late 20s. Almost half of my life has been reduced by this. But I still feel nobody will listen to me or take me seriously.
Totally understand why many sufferers end up resorting to suicide.
It is an absolutely appalling condition – and everything that goes with it is just as awful.
Much gratitude for anything you can do. .
Anne
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Thank you so much for what you’ve written. It means so much to everyone with M.E. We so badly need anyone who has a voice to speak up on our behalf. We need understanding, empathy, awareness and most importantly RESEARCH, RESEARCH, RESEARCH. We will only get that if people like you are listening. There is an excellent documentary called Voices from the Shadows if you haven’t seen that. I’d love to see that being shown on the BBC.
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Thank you!
Here’s a short blog post I did in May to try and help others understand what it’s like to live with moderate ME
Well enough to drink coffee?
http://sallyjustme.blogspot.co.uk/2015/05/well-enough.html
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John, I have much more info that needs airing. Can we talk please?
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Dear John, from the bottom of my heart, thank you for raising awareness of our plight. It is so misunderstood and I’ve suffered so much mis treatment very similar to Naomi, who is an absolutely amazing advocate for Me awareness and research, Im so glad you got to meet her and her family. I’ve had ME since 2006, I wasn’t severe straight away but have become very ill indeed. In 2013 I had 9 admissions and 4 of those were directly life threatening, all my organs just started failing and the Drs couldn’t believe that ME (the illness so mildly described) was doing this. Thankfully, out of no where I stabilised. By stabilised though, I mean I survived, Im now permanently catheterised, needed tube feeding at one point and need 24hr care which my parents thankfully fought for, as I wanted to lead as independent a life as I could. Thankfully whilst I’m still very ill I am very slowly making improvements, but I cant imagine a point in my life where I won’t need this level of input, as improved as I am, I still need morphine to make it through the day and night. I just want to say thank you, becuase through this I’ve been disbelieved by my own family, and it’s been hurtful. I’ve had people suggest that is all down the mental illness, or that Im lazy or like attention, so on and so forth. The only thing I’ve ever wanted is to be well. I’ve come to terms with my reality now, I know that while this might improve, becuase I’ve had it so severe for so long, it is somthing that will be be life long and my life will most likely be a short one. I really hope it’s a short one, because I don’t want to suffer this much until my 60s or 70s as Im only 24 yet. Sorry, Im digressing. I wants to thank you for giving us a public voice which is one of advocation and positivity on our behalves. We are so ill, the public can easily hide us, we aren’t seen, we aren’t heard and people dontknow the level of suffering occurring, especially with the severe community where people are struggling with organ failure and the like. We were advised for me to prepare and sort out my affairs. So at the age of 22 me and my mum and dad were speaking about my wishes and funeral plans, and were I wanted my body to go to medical research etc. They weren’t easy discussions, yet even then, I was still treated like a malingerer sadly. I’m just so glad for your interest and support in Me and I thank you for raising the profile and awareness of this disease. Bless you and I can help in any way, let me know. My email has been logged on the comment thing. Thanks again and blessings to you Kara Jane Spencer xxx
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Thank you again john,
I commented on your original blog so once again I am asking you to consider the Chilli ME Challenge hoping to turn up the heat on the ice bucket challenge but for ME awareness and funds for research.
It is a grassroots patient led campaign where healthy participants take a bite of a hot chilli film their funny reaction upload it nominate five others and donate.
We need to make this viral for ME awareness globally. The stigma has to stop and people need real medical help. We have been forgotten about long enough.
Please only support charities where all the funds go to biomedical research.
Please find Llewellyn king’s and Dr. Lipkin and Hornig’s #chilliMEchallenge on YouTube xxx
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I think you will find that John accepted the challenge Nicola – see his reply to your appeal on the previous blog.
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Thank you for writing this. The mere fact that you are willing to be our voice means more than you can know. You are a very welcome drop in the ocean, so to speak. The ignorance and misunderstanding is so hurtful and harmful. Our reputation as ‘difficult’ patients goes before us, but one cannot imagine how desperate one feels when being accused of imagining an illness that has taken our lives but no quite killed us.
Thank you again.
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Thank you so much for what you’ve been doing on your show, and your pledge to do more.
I’ve had M.E since I was 14, and am now 34. The prejudice and lack of help I encountered in the early years were, frankly, terrible.
You ask what sufferers think we need now, and I would echo the calls for research. In America, in Norway, we know that proper work is being done into the physical causes. Meanwhile, all the medical help in the UK is a psychological ‘coping’ model. Speaking for myself, I know I don’t need help in how to live my life, if only this physical illness would stop.
The problems we face accessing benefits are also pretty bad. When the government tightened access to sickness benefits, there were headlines about people with cancer and M.S, MND, being made to prove they were ill – etc etc.
No-one ever mentions M.E. It’s an unfashionable cause. Yet the tests are almost designed to catch out our symptoms and condition. As a result, many people have suffered a great deal through horrible experiences and assessments, and real financial hardship. This is something which could really do with being discussed, openly. People who have been bullied and humiliated by the DWP feel ashamed to talk about it, but if you could publicise how many and how much we have been excluded from the welfare provisions in the country, I think that is something worth raising. During a period of better health, I went to university, where I qualified for a great deal of help and allowances, because I was recognised as disabled. From the welfare system, the same person, with the same history and the same doctors and the same medical notes, finds herself not fitting into the categories. There’s no other illness this happens to.
Thank you for your work for us! If you can raise these issues further, we would be so grateful.
Hannah
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Sorry, john, but I meant to add that Julia Newton at Newcastle University has a research group, working on M.E, who have been turning up interesting findings. There is a bio bank project at London Universities as well. They aren’t well publicised, but they could both have something to say which could do with a wider audience to hear it.
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I think I am correct in saying that both of these are funded by M.E charities. I do not believe that there has been any state-funded research into physical causes of M.E in the UK. That is something which I think is worth more people knowing.
*I will now let someone else have a say – sorry John! So glad someone is interested in this issue – thank you.
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Hi Hannah, there’s also research on the gut microbiome in ME underway at Norwich Research Park and on B-cells in ME at University College London, prerequisite to a clinical trial of B-cell deletion therapy. This is all being done in collaboration with other researchers in UK and abroad and is has been organised and funded by Invest in ME charity. Our cause exists to help them raise the funds so that the research can begin and also proceed to conclusion without funding-related doubts or delays.
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Thank you John, so much for sharing the issues here. I can suggest something to further spread the word and help people.
There is so much pain out there for people with ME and their families. Disbelief from society fuelled by ignorance which in the past the press has perpetuated. You really can make a huge difference in bringing the issue into the public domain.
There is currently a Change.org petition asking David Cameron to support more proper biomedical research into the condition. Could you publicise it?
I don’t have a link here. Current research by the MRc is limited though hopefully in the right direction.
My son has had ME for nearly 5 years after a viral infection at 18. He has lost his youth ,self esteem and hope and now lives in constant pain worrying about how bad it is going to get and is life worth living. Those special years of being a young adult are gone and cannot be replaced. The impact on the family cannot be described and there is no support whatsoever ever.
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Well done. I hope that some light will be shed on severe M.E too not just mild and moderate. The 25% of us that are house bound and bed bound. A lot of us being tube fed and struggling for air. Living our lives in dark silent rooms overwhelmed by agony and fear and loneliness. How laughable it is that anyone would think anybody would choose this life. Keep up the good work.
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Hi John,
Thanks very much for doing this. I don’t think we’ve had such a response from a radio host before and certainly not one from the BBC.
Illness Management is about all we really have – learning to cope and largely self-manage the condition whilst trying to survive – until such time as bigger and better biomedical research studies can be funded and are better able to understand the disease mechanisms and point the way towards actual treatment.
There have been some really interesting developments on this front and several initiatives over in the USA that have laid the foundations for recognition and improved central funding, but since publication earlier this year – things have gone a bit too quiet.
I think a show that talks about the better ways to manage this illness – there’s more to it than pain management – and which focuses on the more recent and better quality research studies would be a terrific compliment to what you have done thus far.
If you want to contact me and discuss some more, then please do: rjf.firestormm@yahoo.co.uk
I have had a diagnosis of ME for 16 years now.
Thanks again.
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Thank you John for seeing this illness and believing in it and our stories. I listened to the recording of your radio interview and was struck by the fact that an OT was talking about diagnosis…
How many other illnesses do you think would be diagnosed by allied health rather than medicine? Despite what the health professionals say, if in fact the medical profession thought this was anything other than psychosomatic, doctors would be the first port of call in any CFS/ME clinic.
We desperately need the medical profession to take it seriously and to stop doing us harm by their dismissive attitudes and disbelief. Supportive doctors are very few and far between, and unlikely to raise their heads above the parapet with their peers. This must change….
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John,
I heard about your blog through Phoenix Rising and have shared it on my Facebook page as well. I will put a link on my next blog post as well. I just started it its small but I hope that someone sees it and a Canadian journalist follows your lead. Thank you for being open-minded and writing so eloquently about your experience.
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John, thank you for taking an interest and showing your support of us patients suffering with this terrible disease. It takes a special kind of person to take note of what is happening when the world has largely ignored us. I think because we are so sick a lot of us are bed- or house-bound and so aren’t visible to the public, and the rest are just struggling to survive and don’t talk about it much because public attitudes aren’t always positive.
This seems to be changing in the last couple of years with more people like yourself making an effort to help and that helps encourage those people to talk about it. That’s how we will make progress, by exposing it to the light, so thank you for your part in that.
I was born in Bristol and grew up in Chipping Sodbury. I have had ME/CFS for seven years. Before that I had a great job working in Bath, which I loved and was good at, and I was very fit and healthy. That is all gone now, like I was in the wrong place at the wrong time. Nothing I could do. My daughter is four now and I can’t even take her to the park. I live in hope of change though, better research, and finally, treatment so that I can go back to working and having a life.
There is some exceptional work going on in a few places, with some world renowned experts on-board, though in all cases, the main funders have been the patients themselves, so far. Maybe you would consider having some of these researchers on your show at some point. My email is iamclarkellis@gmail.com if I might be of help with arranging that.
Thank you again.
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Thank you for your support for ME. We need all the help we can get to raise awareness and dispel the persistent myths and nonsense.
It truly is an unimaginable, horrendous, debilitating and complex multi-system neuro-immune illness, it destroys your life and robs you of living, we just exist.
Here are some websites
http://www.actionforme.org.uk/get-informed/about-me/what-is-me/more-about-me
http://www.meassociation.org.uk/about/what-is-mecfs/
http://www.investinme.org/InfoCentrehome.htm
http://solvecfs.org/what-is-mecfs/
http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
These are a collection of blog posts written for #may12blogbomb to raise awareness for International ME/CFS/Fibro awareness day on 12th May (severe ME awareness day is 8th August)
http://sallyjustme.blogspot.co.uk/2015/05/may12blogbomb-2015-link-list.html
Happy reading !
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I am so happy to see this! Thank you so much, Mr John Darvall, for your interest and willingness to help ME patients!
Having lived and suffered through nearly four decades with this horrid illness, I’ve been subjected to blazing shit loads of scorn, criticism and contempt regarding ME. It’s hard enough to be so ill that you can barely raise yourself out of bed, but then on top of that to have to deal with the massive amounts of ignorance and meanness, that are hurled at you from all angles when you have a disease that is repeatedly and wrongly dismissed as “psychological,” is beyond anything that can be described in words.
In fact, if you created a horror movie based on what some ME patients have gone through in their attempt just to get a diagnosis for their disease, it would sound too far-fetched to be believable.
And then there are some horrors that are even more horrible than that. Take the case of Karina Hansen, a Danish ME patient, who was dragged from her bed and forcibly removed from her home in February 2013 and has been imprisoned in a psych ward ever since. Her story needs to be told loudly and repeatedly for all the world to hear.
Very unfortunately, Karina is not the only one in such a hideously dire situation. Thanks to the arrogance and grandiose narcissism that seems to be so ever present in the psychiatric community, ME patients are being misdiagnosed and forced into dangerous treatments that end up killing some of them. This is absolutely reprehensible and needs to stop.
Anything you can do to enlighten the public and inspire the seemingly rare and few decent people in the medical community about ME would be greatly appreciated.
We are out here, all 17 million of us… and counting! We need a great big megaphone to get the word out about this debilitating and sometimes fatal disease. We need RESEARCH and TREATMENT! We need compassionate allies like you to help us.
Thank you.
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“The biggest issue is ignorance and belief in ME, and I include myself in this. To those who have criticised my blog thank you as you are right. I have a lot to learn.”
Your willingness to listen to patients is like a breath of fresh air. It’s clear you understand the role of journalists is to Comfort the Afflicted and Afflict the Comfortable. Bringing attention to the abysmal plight of patients brings us much comfort, and I thank you for that.
Now about that second part – afflicting the comfortable. While ignorance is a huge issue for us, it’s not the real story. When one digs a little deeper into the political history of this illness, one finds a sordid story of disability insurers doing everything they can to make us go away.
A good place to start on understanding the political situation in the UK is the 2006 Gibson Inquiry, also known as the “UK Parliamentary Group on Scientific Research into Myalgic Encephalomyelitis”.
This investigation found that “CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies.”
The inquiry called for further investigation of “numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here.” Nine years later we are still waiting for that investigation.
In the US the official disdain for patients is even more obvious. One of our advocates has used the Freedom of Information process to uncover an official letter where a prominent National Institutes of Health (NIH) official describes his intent to re-define the illness out of existence. This letter can be viewed here: http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html
The Countess of Mar, a member of the Gibson Inquiry, has been a tireless campaigner on our behalf. She is well versed on the politics of our illness. She can explain the history better than I can, and would make an excellent guest for your radio program. I hope that you can find the time to contact her.
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These are all really good points. What happened after the Gibson report, what has really changed?
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I have lived with ME for more than 20 years. My 25-year-old son has had it for 8 years.
Thank you for what you have said … and for caring about the largely-unremarked decimation of this community.
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Hi John. Thanks for taking an interest in those of us with ME. I have just send you a message via Facebook to ask how I might contact you to discuss ME. I spend what spare energies I have to try and raise awareness and this has included trying to contact various TV programmes, personalities etc. I would be grateful if I could talk to you about this sometime.
Thanks, Bill Clayton.
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If you’d like to join us on Phoenix Rising (one of the online forums of ME patients) in order to gather more info and to hear more stories, feel free to sign up. Then go to this thread, which was started today reading your radio show and blog post. http://forums.phoenixrising.me/index.php?threads/john-darvall-bbc-radio-wants-us-to-tell-him-how-he-can-help-us.38794/#post-620238
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I have now looked at the thread on your site. I am first and foremost a journalist so will take all views and give a voice to all while making sure that what is said is true and real. Thanks for the link.
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Thanks for taking a look.
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John, Thank you so much for taking such an interest in an illness that is in fact oftentimes so severe and affects so many systems of the body clinicians cannot wrap their heads around it and therefore think it is of psychogenic origin. This is exactly what happened with Multiple Sclerosis years ago before research and diagnostics improved and lesions were identified. Now we need a huge push from advocates all around the world to carry on with the pioneering biomedical research that is beginning to happen (but is vastly underfunded by government bodies), such as the Rituximab and Cyclophosphamide trials in Norway and the fantastic project by Dr Ron Davis, a major engineer behind the human genome project who’s son Whitney is suffering in the most horrendous state from this illness. Thank you so much for your support John, it’s hard to explain how much this means to myself, my sister who also has ME and the community as a whole.
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Thank you for listening..I can hardly believe a journalist in the UK is actually listening and believing! You can not imagine how long we have waited for this!
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I second what Rosie wrote above. The UK is known for locking up ME patients into psych wards (they do that in the US, too, actually!). So to have a voice for ME in the form of a BBC journalist is like a HUGE blessing. Thank you, John, for being an caring and smart person. Please do not stop speaking out for this community. All of us had lives and careers too, like you, before we were hit by this disease and struck down. The number of young people with this disease on social media is staggering. Just look on Instagram under any # with Chronically something or other.
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thanks John!
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[…] ‘Not Mid Morning Matters’, the blog of BBC Radio Bristol presenter John […]
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(Posting reply again as it vanished before)
Thank you so very much for your continued support for ME. We need all the help we can get to raise awareness and dispel the persistent myths and nonsense.
It truly is an unimaginable, horrendous and debilitating multi-system neuro-immune illness. It destroys your life and robs you of living, we just exist shut away behind closed doors and curtains.
Here are some websites for you
http://www.actionforme.org.uk/get-informed/about-me/what-is-me/more-about-me
http://www.meassociation.org.uk/about/what-is-mecfs/
http://www.investinme.org/InfoCentrehome.htm
http://solvecfs.org/what-is-mecfs/
http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
These are some blogposts that were written for #may12blogbomb to raise awareness for International ME/CFS/Fibro awareness day on 12th May (severe ME day is 8th August)
http://sallyjustme.blogspot.co.uk/2015/05/may12blogbomb-2015-link-list.html
Happy reading !
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Also these
http://www.pugilator.com/awareness/sixty-years-ago-a-doctor-and-a-nurse-became-ill-royal-free-disease/
http://www.meresearch.org.uk/news/rsm-mar-talk/
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Thank you so much for the awareness into this disabling painful condition. I was once a sports therapist and Advance Personal Trainer and triathlete before becoming ill with meningitis. I never fully recovered and after contracting the viral kind a few times it left me with the diagnosis of M.E. I love sports but can only watch sometimes when my health allows. You become very isolated and have to have so much incredible patience. As all you can do is lay in silence until the relapse eases. Each relapse could last days, weeks or years!!!
Invest in ME are giving us hope in raising funds for biomedical research that they have started into finding some hope for our future. If it does not come in my time, please I hope it is there for the young children that suffer so badly.
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Dear John,
Thank you so much for everything you’re doing. As you’ve seen, there are many, many people affected by this awful illness – not just us sufferers but our families and friends too. I’m one of the lucky ones, I have a good GP who listens and understands my illness, but he’s an exception. I’ve had a psychiatrist tell me that my being sick was probably caused by a trauma from my childhood (I had a totally unremarkable and happy childhood), that he could get me out of my wheelchair through therapy, a neurologist tell me he “didn’t believe” in ME and another one tell me my symptoms were “Functional syndrome” and “conversion disorder”, which is neurologist-speak for psychosomatic and/or hysteria
.
They don’t use those terms now because, apparently, it upsets patients. Can’t imagine why, when I presented with exhaustion, slurred speech, muscle and joint pain severe enough to need morphine to deal with it, balance problems, poor concentration, poor short term memory, digestives problems, sleep issues, poor coordination, blurred vision, word finding difficulties, and an inability to be upright for more than a couple of hours at a time. And then to be told that a supposed specialist “didn’t believe” in the diagnosis I’d been given.
So you can see why your support and willingness to listen and learn from us is so important. This is the level of ignorance and dismissal people with ME face all the time, and it’s not good enough.
All the best.
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Dear John, thanks so much for your interest and support. “Let’s Do It for ME!” is the inclusive patient-driven community campaign created in support of the proposal by Invest in ME Charity to establish a centre of excellence for translational biomedical research: the first of its kind in UK and Europe. Our initial fundraising target for the ‘Can Do’ IIME Biomedical Research Fund was £100k to fully fund the foundation study of the gut microbiome in ME research at Norwich Research Park. We are now raising the next £100k for future phases of that research. Our fundraising also enabled the B-cell research prerequisite to a UK clinical trial of rituximab to proceed without delay and we are working towards the £450k target for the IIME Rituximab Research Fund. So this is leading-edge research organised by patients/parents with the wonderful cooperation of world-class researchers in UK and abroad. We who run the campaign are long-term house/bed-bound, so we greatly appreciate any support and are truly inclusive of all ages and levels of illness severity from the most severe (immobile, tube-fed) to what we affectionately term our ‘willing wellies’ – fit and well friends & family. For anyone wishing to join in the fun for this very serious cause, we are sure to have something to suit you at http://ldifme.org/
With grateful thanks and very best wishes, Team Let’s Do It for ME!
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I was really impressed with your radio show on M.E, I imagine you didn’t know the person had M.E because many people don’t tell others due to the usual comments people get like ‘yuppie flue’ ‘that’s all in your head’ ‘oh, that tiredness thing’ ‘there’s no such thing’
M.E is classified as a Neurological Illness yet something like over 70% of Neurologists don’t believe in the condition at all. It’s a complex multi systemic illness and medical professionals on the front line dealing with people haven’t got a clue about it and are giving patients advice that is dangerous and will make their health worse!
In the past I’ve been told by medical professionals that I was too young to be incontinent, I didn’t need cot sides up on a hospital bed as they are only for elderly people (after falling out of the bed several times at home I was given cot sides, I was 24 then), M.E isn’t real, ME is just a physical manifestation of psychological problems, I need to stop lying in bed and go out and live my life, it’s just depression, I need to exercise…..and the list goes on and on….yet we are banned from donating blood and organs – this is apparently so that our health doesn’t get worse but the ban includes after death and your not exactly going to get any worse than being dead!
I’m severely affected with ME and from Northern Ireland, a freedom of information request was put in here to ask what training GP’s had on ME – the answer was that they have NO training. In my health centre, there’s 1 GP out of 8 who believes in ME and knows something about it, even then his knowledge is very limited but he is willing to learn in the years since I’ve been diagnosed he’s learnt more than he knew when I was diagnosed. I have an 8 year old son who knows and understands more about ME than 7 GP’s combined!!!
There are an estimated 7000 people affected with ME in Northern Ireland – although the actual amount is likely a great deal higher, doctors don’t know enough about the illness to diagnose it, We have no specialist here at all and no ME clinics. There are medical professionals ringing up a regional charity to ask if they can provide information and training about the condition and how to manage it. It’s great that some medical professionals want to know more but shocking that the illness has been around so long, there has been many studies showing that it’s a physical illness, diagnostic criteria produced which would help doctors understand an diagnose the illness but medical professionals are relying on patients to tell them about ME!
There are major problems when accessing health care when you’re severely affected. I’m bedbound, spend my days in a hospital bed, have carers come in to wash me and district nurses come out – yet I can’t see any GP. Any time my partner has rung they’ve told him “doctors only visit elderly housebound patients” at 32 I’ve a long wait to see a GP!!!
I’ve needed carers for years but it’s only actually happened within the last year – during previous assessments for care one social worker told me that he “had patients who were really sick like cancer patients” another said there was no way her boss would agree to carers coming in to wash me in bed – I needed to be in the shower, which I can’t use and havn’t been able to for years. So for years I’ve lived with bed sores, not able to manage personal care, sometimes crashing and sleeping up to 23 hours a day, wake, take a drink then back to sleep which can last days, weeks and in the past months at a time.
For a short time I was lucky that I managed to get an advocate who understood ME and got assessed for care again – I’m classed as a neglected vulnerable adult and care was agreed with social worker 7 days a week. The agency that provided the care wouldn’t do their jobs right, one carer was abusive telling me she’d done things she hadn’t and I just didn’t remember because I get confused, they wouldn’t follow a simple task sheet so their contract was stopped by the social worker. This left me with no care once again, the only other agency in my area wouldn’t take on my care and our health trust carers at the time only worker with elderly people.
My advocate left the charity she was working with as her contract was up – without her my social workers attitude changed completely, I was told that carers would only be put in as a short term measure then when reassessed if I hadn’t become more independent and able to do things for myself within a few months of care it would be removed completely as they wanted to create independence not dependence. I tried explaining severe ME isn’t going to suddenly disappear because someone is helping me with personal care and was told “that’s the way our care system works” and that it’s well known there’s a link between ME and mental health!
Due to changes within the trust I’m now with the elderly team (at 32) and their first younger client. However they can only provide care 5 days a week so I’ve nothing at the weekends. The carers spend all week trying to deal with sores on my skin and stop them from getting worse. I can’t eat solid food anymore due to choking and problems swallowing so am on meal replacement drinks and something else for malnutrition, At weekends I don’t get either so have no calories at all. When the carers return on Monday my skin has got worse again and they have to start from scratch till the next weekend! I’ve had almost constant UTI’s for years and now have a catheter in so personal care is essential to help prevent infections, chances of infections are increased with catheter in anyway.
My social worker is off on maternity and her replacement has been trying to get weekend care covered for months but can’t. I’ve no idea if care will be removed completely when my social worker returns from maternity because I’ve not become independent and able to be up out of bed!
I run a group on facebook for people with severe ME and their carers – there are massive differences throughout the UK in terms of what care is available. In some areas people can’t get the care they need at all, in others people who aren’t as badly affected have carers, personal assistants to help with other things and help with housework, 2 people in the UK could have the same needs and level of disability with severe ME but what they can access in terms of care, equipment and access to health professionals can be miles apart! It’s shocking how much of a postcode lottery it is within the same country!!!
It would be great if you could highlight the fact that there’s a huge number of severely affected patients lying in darkened rooms completely forgotten about by the medical profession and have no access to a GP, their pain isn’t managed and are completely isolated with no support from friends or family and struggling to get their basic needs met like personal hygiene and meals! People are refused equipment like wheelchairs which would enable them to get around the house and be more independent. There’s no help available, people need advocates to make sure their needs are understood and met – but in so many areas advocacy services are only provided for the elderly or for people with mental health issues.
Younger people who are severely affected and their parents aren’t accessing medical help at all after battles with social services because the illness isn’t understood and threats to take their children into care because they are missing school – they aren’t well enough to go to school. After getting cases closed with social services they don’t want to risk seeing doctors as so many haven’t a clue about the illness and would likely contact social services again which happens a lot saying ‘the young person isn’t being looked after properly, not attending school’ parents have been accused of Munchausen’s, told if they don’t make their child go to school they’ll be taken into care, wanting to put young people into psychiatric wards because they have ‘false illness beliefs’
If you haven’t done so already – please watch the DVD Voices from the Shadows which shows the damage that’s been done to severely ill people after they’ve been forcibly removed from their homes and sectioned, forced to exercise when their body can’t physically do so which has lead to relapses, decline in their health and sadly death. Listen to the doctors who explain that once a post mortem was carried out it was discovered that the girl had a real physical illness! I’ve contacted several TV stations and programs to ask if this documentary could be shown (as have many other people with ME) and never got any replies!
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John thank you for what you are doing to raise awareness on ME. Could I ask you if you could find a researcher on Vaccine damage causing ME. I asked Hazel Odowd of the ME clinic in Frenchay a few years ago if any one was doing reasearch into Vaccine damage causing ME and she said no. I think my ME was caused by vaccines when a baby. At 6 months old I was given the smallpox vaccine when the age on my medical card was between 18 months and 5 years that was because going to Cyprus as my family was being posted there as my dad in British army. Then Vaccines given out of sequence and then when back in UK at 4 given Rubella – German Measles two vaccines a month apart when the minimum age is 13 for the Vaccines. I think it overloaded the immune system and caused my ME. Been very ill 20 years now. Also developed another autoimmune disease nephrotic syndrome and FSGS where the immune system attacks the kidneys as not recognising them as part of body – leading to Kidney failure – on dialysis last 2 and half years. Was diagnosed with ME in 1995 by Dr Alan Michael Denman at Northwick Park Harrow as my GP reffered me to him as on Governments ME Task force. Hes retired now would be worth you talking to him hes an immunologist and very wise and compassionate. What happend to ME task force? We need another task force set up – please could you also ask Charlotte Leslie to raise in parliament – we need MPs fighting for us. Charlotte is my MP. Too many people have suffered. We need proper research. Love Rose-Marie Mcginn
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Thank you, John, for your rare humanity in looking at this illness with compassion and without prejudice.
Many years ago I had a serious road accident and ended up in Intensive Care with multiple injuries, some of which were permanent. The health care I received from the NHS was excellent.
A few years ago I came down with ME/CFS after contracting a virus. It has had and continues to have a much more serious physical impact on my life than the accident, and yet the treatment I have received from the NHS has been little short of harrowing.
When the illness struck, I sought medical help in the belief that I would meet with some understanding of my condition, or if not understanding then at least compassionate treatment. Instead, like many others, I met with scepticism, disdain, and a door closing in my face. At a time when what I needed most was help, I was shown contempt.
I think it is fair to say that this illness is unique in causing its sufferers such extreme physical hardship and at the same time the unimaginable extra hardship of having their suffering denied or, perhaps even worse, proclaimed as psychological in origin. We regularly have to pinch ourselves just to be sure that we’re not imagining this whole waking nightmare.
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I live in the United States, and have been disabled with M.E. since 1994. Unlike most patients in the UK, I have been in studies and know a lot about the parameters of my disease, M.E. I have significant immune defects (almost no natural killer cell function, the 37kDa Rnase-l defect, and an abnormal cytokine pattern); chronically activated viruses – human herpesviruses (or HHVs) – HHV-4 (EBV), HHV-5 (CMV), HHV-6A and HHV-7, and tested positive for 3 strains of Coxsackie B. In 2009, Dr. Dan Peterson found active HHV-6 and CMV in my spinal fluid. What a surprise that I had all the symptoms of encephalitis and meningitis.
I have had abnormal SPECT scans, Halter monitor tests, and my one-day CPET score was so low that by that measure alone I would be considered a serious cardiac patient.
But on the immune drug Ampligen (a phase III experimental drug that has been used for this disease since 1980, but was created by a small, venture-capital firm that cannot get past the FDA’s maze of a regulatory process) – my immune defects go away and the viruses return to dormancy. I become a high-functioning patient – I can’t return to normal; I was too sick – but I can drive myself, write, read a book, walk on the beach, and I danced with my son at his wedding.
I live in terror of losing the drug. The two times I was off it – once voluntarily; once because FDA took it away – I relapsed totally within a year. It is like being the Robert de Niro character in Awakenings.
You can find a longer description of my history with M.E. on my blog, if you are interested:
http://slightlyalive.blogspot.com/2014/05/may-12-my-20-years-with-myalgic.html?showComment=1437336999107#c9130410930431854494
In the US, there are over a million adults who have M.E. or CFS – and even CDC admits that 85% have no diagnosis. 85%! Almost three decades after they chose the name “chronic fatigue syndrome,” they have made no progress in finding patients, let alone getting them treatment. They dismiss my test results in various ways – one doctor high up in the HHS bureaucracy told me that “You people test positive for viruses you don’t have.” I asked him where the research was that demonstrated that, and he wheeled and walked out the room. That is the sort of response I get in Washington.
For me the saddest aspect is the young people who get it – at least I did get to marry the love of my life, have two children (and now two grandchildren), have a great career, do lots of interesting things. Young people are vulnerable to the worst that bureaucrats can dream up – in the US you are not likely to get committed to a mental hospital (a USSR-style prison for those such as Karina Hansen of Denmark), but they can take teenagers away from their parents and put them in foster care for the sin of being unable to exercise.
And the scariest thing I know about this disease is that there has been a new set of cluster outbreaks, which nobody is measuring because nobody keeps a record of it. How do I know this? For the first time since I became ill, I am being contacted by people who had just fallen sick in the last five years. People do not understand that there are recurring epidemics of this disease – and nobody is safe.
Thank you so much for bringing this to light.
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My apologies – that’s not the right URL for the blog. Try this:
http://slightlyalive.blogspot.com/2014/05/may-12-my-20-years-with-myalgic.html
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Thank you for your help in this John. I have had ME for 5 years now. I can appear ‘normal’ for about 2 hours a day in carefully controlled conditions (low stress, not strenuous, at the right time of day etc). I can do a bit more if I have to but it will make me more unwell , even bed bound.
I feel I should be more honest with people; how else will they really know what ME is like? But explaining properly takes so much energy – energy I had saved for a few precious hours of actually living – or doing the routine things we usually don’t even think about – having a bath, doing the washing up, answering emails etc.
So – THANKS
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Thank you for listening. That in itself is an improvement for thousands who have no one to listen to them. We aren’t hypochondriacs we are trying to get help for 20 Million sufferers around the world only no one will listen.
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Thank you so much for your interest in this disease and for speaking up for millions of patients around the world.
An ME patient and former journalist, Brian Vastag has recently written a very moving plea for more funding, which was just published in the Washington Post! Here is the link if you are interested:
http://www.washingtonpost.com/news/to-your-health/wp/2015/07/20/dear-dr-collins-im-disabled-can-nih-spare-a-few-dimes/
There is a remarkable amount of history and politics surrounding this disease , and I applaud you for jumping in. If you are interested in the history of the disease, Mary Dimmock (an advocate and carer) has written a remarkable and throrougly researched account, available here:
Click to access Thirty%20Years%20of%20Disdain%20How%20HHS%20Buried%20Myalgic%20Encephalomyelitis%20May%202015.pdf
Thank you again.
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If you haven’t already read it, take a look at fellow journalist Brian Vastag’s open letter to Dr. Francis Collins (head of the NIH) in yesterday’s Washington Post:
http://www.washingtonpost.com/news/to-your-health/wp/2015/07/20/dear-dr-collins-im-disabled-can-nih-spare-a-few-dimes/
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(Sorry if this is not a duplicate – not sure my first comment went through)
If you have not already seen it, Brian Vastag’s open letter to Dr. Collins (head of NIH) from yesterday’s Washington Post is a good source of information:
http://www.washingtonpost.com/news/to-your-health/wp/2015/07/20/dear-dr-collins-im-disabled-can-nih-spare-a-few-dimes/
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