About Alisha
I want to take a moment to welcome you all to Friends with ME.
Friends with ME was set up by myself Alisha Whittam, I am a forty-something wife and Mum. I have Severe ME which has left me completely bedridden, I have gone from having a full-time career to being bedridden. My life has gone from being a full-time Mum with dreams and plans for our future to now relying on my Daughter & Husband to care for me.
I was diagnosed with Myalgic Encephalomyelitis in 2012 which makes this my tenth year with diagnosed ME. Like many others, I suffered from ME symptoms for many years on the run-up to my diagnosis.
When I was first diagnosed I went through a grieving process for my old life and the friends/family members who had promised to always be there for me became the people who got in touch less, thankfully this is when I started making friends within the ME community.
I must stress that I hold no ill-feeling for my friends and family after all they can only ask and hear no for so long before they want to give their own lives priority.
The people in the ME community that took me in as a friend and listened to me in those early days will forever have a special place in my heart.
Introducing Friends with ME
By joining together as a community we can make a real difference, not just by listening to each other but by organising action to make a difference in the lives of other ME Sufferers.
I know from speaking to sufferers from all over the world that we all do not receive the same treatment and I don’t mean a difference across different countries.
I am very lucky to receive a high level of care from my own GP and my local primary care trust, yet someone who lives a few miles away doesn’t have access to the same level of care if they come under a different primary care trust.
The care for people who depend on you should not be dictated by your home address or how loud you can shout to bring about change. This is why I Friends with ME was created, we want to help give a voice to the voiceless of millions of ME sufferers around the world who live and manage this illness alone.
I think that it is time to create something for our community by our community and I know that we have some amazing charities who are fighting for us who do incredible work, I just think it’s time to start something by us for us. It’s not going to be easy, I know that but who is going to fight stronger for us than us.
Strength in numbers
If we can’t rely on our health service and the people in government what’s stopping us from bringing about change together.
We have an estimated 17 – 24 million sufferers around the world, just imagine a group even half that size and the reach that we could achieve.
We have so many people within our community who before ME took over their lives had training and qualifications that could benefit Friends with ME, this is why I am appealing for your help with this. If you think that you can offer help or advice and you want to get involved please email me at friendswithme@alishawhittam.com
A new community for us by us
This isn’t going to be easy which is why I am appealing for help and while I have so many ideas the larger we get the more information we will be able to offer to solve some of the everyday things which make our lives difficult.
I want Friends with ME to be all over the world, so if you believe you have what it takes to set up a Friends with ME group in your area then please email me at friendswithme@alishawhittam.com
Just imagine a world of days out, picnics, days on the beach, coffee mornings and so much more but first we need to reach you all.
So I ask every single one of you to do your part and share this with any people you know with ME.
Share this with people who have made a difference in your life and ask them to get in touch.
Please tell them what we are hoping to achieve by doing this or tell them to message me I am here to help in any way I can to make this our reality.
It’s time for change, its time for Friends with ME
Working towards a new future
Having ME in today’s society doesn’t work for a lot of us and I think that it is time to change that.
We live in a truly amazing age of technology and if you are bedridden or you live with an unpredictable illness as we do then technology could be a blessing.
I absolutely understand that not everyone in the world is up to speed with computers, we can change that in our community by showing everyone how to set up a zoom call. Just being able to talk to someone with ME can make a huge difference to our mental health.
While our physical world may be different technology lets us talk to each other all over the world just as long as we have an internet connection.
Speaking of technology
Why in 2022 cant we have medical assessments across the internet?
I know that I will not be alone in saying that I have had to cancel a medical or dental appointment on short notice.
While this is unfortunate on both sides, if you live a life when you are unsure if you can make an appointment in a physical sense then why cant that conversation be had online?
The NHS in the UK makes a point of telling patients how much it costs them if you are unable to make an appointment but surely with technology being what it is we have a solution for this available immediately.
I believe that together we can create enough noise to be heard on this matter and help bring change to the lives of millions immediately. For example, think of medication reviews being done online and the immediate relief that could bring about to someone in pain.
Just think about the difference being on a medication that works could have on your life and not having to wait until you are having a good enough day to be able to physically get into the surgery.
Working Together
Across the world, medical advances are being made daily that could make a difference to people with ME, just think of stem cells.
Think about foods after all the phrase says You are what you eat but how many of us know the correct foods to eat to make a difference to our health or what vitamins or minerals could help reduce inflammation.
What about up to date information on getting the best night’s sleep, we know what works best for us and just by sharing your experiences with Friends with ME, we can then share to other followers what helps someone with ME get a better night’s sleep.
How many of us use a weighted blanket for instance or a pillow they swear by or even sharing what does not work for people with ME could make a difference.
By creating one Community of people with ME we can start with questionnaires which would then allow us to offer immediate advice back to our community.
Pacing and Updates – What I learnt about pacing I found out about 10 years ago, surely in that time we have had advances but who is updating us on advances?
What if what we do each day is now wrong?
What if I am making myself worse? Who do I go to if my symptoms are getting worse?
Surely it is time that we started having a solution to ME and while a cure would be amazing what do we do before that.
We should be able to share up to date advice based on your feedback on medications that work and what doesn’t work for example. This would then allow the sufferer to speak to their own GP based on advice from other ME sufferers.
Please take note this advice could never be classed as medical advice and you should always speak to your own GP
Being able to work with ME teams and specialists to give them an up to date overview of the ME community could be a positive step for all of us.
In the 10 years of having ME I have never once been asked about my ME, I have never been asked to fill out a survey of what affects me daily or if my ME has started having new symptoms the longer it has affected me.
While I do speak to my GP it would be beneficial for our community to know this information and I think Friends with ME could do that.
I believe that by working together as a community as well as with ME specialists and teams we could make a difference to the lives of ME sufferers across the world.
Surveys in the medical realm mean applying for funding, if doing this ourselves is the answer then let’s start doing it.
Contact us at Friends with ME
Social Media plays a huge role in everyday life which is why I have created Friends with ME social media pages across several platforms, so far you can join us at
https://www.facebook.com/FriendswithMECFS
https://www.instagram.com/friendswithmeglobal
https://twitter.com/FriendswithMEww
https://www.reddit.com/r/FriendswithME/
Let’s make a real difference
I truly believe that the difference starts with each of you.
Just sharing your experience with our community can make a real difference to the lives of other sufferers after all who better to talk to about ME than someone who suffers from ME.
I believe that this community can bring together sufferers not just for sharing advice but a place to start friendships and so much more. I have so many more ideas and I know that each of you will have ideas too.
Coming together is just the start so please I ask you all to join our groups and share them with other sufferers.
This is just the beginning and I can’t wait to meet you all,
Love Alisha ❤️