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Welcome to our blog page. This is where you will find our recent news and our future plans. If you have anything to share then please email it so we can post your news too!

Christmas meal and meeting

posted 17 Nov 2018, 09:45 by Gemma Richards

Good evening all, 

Sorry to mention the C word in November but it is only 2 weeks until December and a few more days after will be our December meeting. Also I urgently need some responses about the Christmas meal which I have only just got round to finalising (apologies but had another rough month with both Rebecca and I ending up in hospital on different occasions- thankfully we are both ok now so nothing to worry about. 

Christmas Meeting Details : 
Our next meeting is Tuesday 4th December, 13.30 till 15.30 at St John's Church Hall. The theme is Christmas with a Christmas outfit competition, a buffet and a raffle to start the celebrations. So dig those jumpers, hats, earrings out and join us for a relaxed social afternoon. 

Christmas Meal:
The date of the Christmas meal is Tuesday 11th December from noon (sorry to those who attend the Fibro group but I could not get the dates changed however please do join us after for a drink). This will be at the Mermaid pub in Ipswich. If you intend to join us please could you confirm by the end of Tuesday night (this Tuesday 20th November) as I need to go in on Wednesday to confirm and please could you take a look at the menu (link below) and send me your menu choices by next Saturday. I really hope you can join us for a lovely meal. I can offer a lift for 2 people. The link for the menu is  https://www.mermaidpubipswich.co.uk/menus/carvery-festive-menu-2018/

Finally for our 2019 meeting dates please visit our upcoming events page http://www.cfsunite.co.uk/meetings/upcoming-events. 

Recommended book

posted 17 Nov 2018, 08:24 by Gemma Richards

Hi all, I wish to share with you an email from Catherine Saunders who has had a book published called "Understanding Severe ME - Essential Guide for Family & Friends"  in a bid to raise awareness. Please find the email below with a link to the book. I intend to get a copy when I have the funds and will share it with the group. 

Dear Ipswich ME Support Group,


Great to hear there is a support group in Ipswich helping ME patients & their families cope. 


Hopefully, my email will give your members a further source of information and guidance.... a book written by me, a former Severe ME Patient of Professor Findley...the consultant who used to head up the amazing ME Specialist NHS Unit in Essex, sadly now closed.


Long story short, I was very severely affected and am now approx 70% recovered...but as you know, not all severely affected patients are that lucky.


I lost over a decade of my life to this cruel illness and one of the hardest things to cope with - besides the bedpans, bedbaths, spoon feeding, light sensitivity and relentless pain - was how little my Family & Friends knew about the harsh realities of Severe ME.  Like so many other patients, this caused immense stress at a time when my Carer husband and I desperately needed their understanding, support and compassion.


So, one of my goals, when strong enough, was to try and turn my own experience into something positive, something which might help all those thousands of poor families affected by Severe ME following in my wake.  


To this end, I have recently published a book on Amazon:  "Understanding Severe ME - Essential Guide for Family & Friends" 


https://www.amazon.co.uk/Understanding-Severe-ME-Essential-Friends/dp/1973344459/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=

Buy Understanding Severe ME: Essential Guide For Family & Friends by C.H. Saunders (ISBN: 9781973344452) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

I lost many years to ME but I am one of the lucky ones.  I had 2 x 6 week admissions to Professor Findley's renowned NHS Severe ME Unit in Essex plus the support of Specialist ME Outreach Nurses in Greater Manchester for over 3 years.  These interventions helped my recovery dramatically but sadly both specialist ME units are no more.  And so, in addition to explaining what the hell is going on in Severe ME, I also detail in my book what I learnt from these specialist ME Services that helped in my own recovery. 


Feedback so far has been extremely positive and the book is being used far more widely than I ever anticipated:


  1. Mild/Moderate ME Patients are asking Family & Friends to read it to explain how severe ME can become if patients are pushed. 
  2. Patients & Carers are giving a copy to their GPs.
  3. Patients & Carers are giving a copy to local ME/CFS Clinics.
  4. Carers of younger Patients are giving a copy to their patients' Schools/Universities.
  5. Severe ME Patients & Carers are giving a copy to Friends & Family.

Feedback like this is wonderful.  This is the ME Book I wish had been around when I was so ill, a book that could have spoken for me when I was too ill to speak for myself. 


Am attaching a digital information leaflet and a copy of a letter from Professor Findley himself about my book, so you and your team can be assured it has the support of one of the most highly respected ME Specialists in the UK.  


And if you would like some printed leaflets for your team and the patients you support, please just drop me a line, very happy to post some out to you for your members.


Really hope you find the book useful, and please, feel free to contact me if you have any questions at all.


Here is a shortened link to Amazon...the book is available as a Paperback and as an E-Book.


https://amzn.to/2slJ37h


Kind regards, 



Catherine 

(C H Saunders - Author)


Meeting tomorrow

posted 5 Nov 2018, 12:40 by Gemma Richards

Good evening,

Just a little reminder that tomorrow is our monthly meeting. We have Ben coming who has worked with One life coming to talk about pacing and exercise. I will also be hopefully sorting out the Christmas meal and need some nominations for Vals flowers of hope.

I will be in touch shortly regarding Xmas meal and other information but just wanted to remind everyone the meeting is tomorrow at St John's Church Hall, 13.30 until 15.30pm.

Kind regards, best wishes and gentle hugs

Gemma and the CFS Unite team x

Email sent today regarding 2019 dates

posted 26 Oct 2018, 02:57 by Gemma Richards

Good morning lovely people, 

How is it nearly November already? I hope you are keeping as well as possible in the warm weather we are still having. 

Just a couple of things. 

We had our quiz last Saturday and it was lovely to see so many members join us for a lovely afternoon. Details of the afternoon and its success can be found on the blog post below. 

Secondly 2019 is nearly here so we are now booking the hall for 2019. The dates are below. I will also be booking two Saturdays for our quizzes and will let you know the dates once confirmed. Our meetings will still be the first Tuesday of the month 13.30 until 15.30 at St John's  Church hall. 

2019 Dates

5th February
5th March
2nd April
7th May
4th June
2nd July
6th August
3rd September
1st October
5th November
3rd December

Please note I have not booked January as this would be the 1st January however, if there is interest I can arrange a coffee morning to catch up with you. 

The remaining dates for this year is Tuesday 6th November and the 4th December. We are also hoping to book a Christmas meal. Will let you know details soon. 

-- 
Kind regards, best wishes and gentle hugs

Gemma

Thank for joining us at our quiz

posted 26 Oct 2018, 02:34 by Gemma Richards   [ updated 26 Oct 2018, 02:44 ]

On Saturday we held one of our quizzes and was delighted to be joined by lots of our members and their family and friends. 

 I am delighted to announce that we made a brilliant £301.56p which goes towards the running of our group.  

A massive thank you goes to Lisa and Mike for the quiz, Cathy and Margaret for being our dolly dealers, to Bryan for his amazing cake and charity in donating it and also to David and his mum for tea making. Thanks to everyone who donated cakes and everyone who attended to make a great afternoon. Looking forward to the next one already.

See below for photos of the lovely afternoon. All photos can be found on our Facebook page. 


  
  

   
  


Thanks for another successful quiz

posted 26 Oct 2018, 02:28 by Gemma Richards

On Saturday we held one of our quizzes and was delighted to be joined by lots of our members and their family and friends. 

I am delighted to announce that we made a brilliant £301.56p which goes towards the running of our group.  

A massive thank you goes to Lisa and Mike for the quiz, Cathy and Margaret for being our dolly dealers, to Bryan for his amazing cake and charity in donating it and also to David and his mum for tea making. Thanks to everyone who donated cakes and everyone who attended to make a great afternoon. Looking forward to the next one already.

See below for photos of the lovely afternoon. 

       
      
    
    
  
  
  







Do you love books?

posted 29 Aug 2018, 05:43 by Gemma Richards

New for 2018 - CFS Unite Book Club

If you love books but have a Chronic Fatigue Condition than we are the group for you! We are a small group of book lovers who want to join a book club but cannot read as fast or as much as other people in normal book clubs. The CFS Unite book club is a book club who has the patience to work through the fatigue of reading and having to read the same page again because of brain fog, allowing you to take your time in reading a book and then discussing it either online or in person. At this time the group is on Facebook but if it becomes popular than we will look into an online forum.  

Click Here to be taken to the Facebook page.  

Contact Gemma for more information.

Lisa's trip to RNLI Aldeburgh

posted 29 Aug 2018, 02:11 by Gemma Richards   [ updated 29 Aug 2018, 02:13 ]

Yesterday our lovely Lisa went to Aldeburgh RNLI to give them the cheque for £230, which we raised at our April quiz in memory of her Brother Phil. Lisa was very lucky to look round the Lifeboat station and meet Steve The Coxwain. Thank you to everyone who donated at our April quiz and for their support and thank you to RNLI Aldeburgh for making Lisa's day so special.

I am sure you can agree Lisa would make an lovely looking RNLI crew woman!

Pictures from her day are below.



Upcoming events and spam mail!

posted 22 Aug 2018, 01:41 by Gemma Richards

Hi all,

We have lots of events coming up and I wish to ask for you to please check out our upcoming events page as you will find not only our meeting dates for the rest of 2018 and soon 2019 but also other events including the upcoming day trip to Felixstowe, and the October CFS Unite quiz. The link is http://www.cfsunite.co.uk/meetings/upcoming-events.
More events are being added soon, hopefully a coffee morning, the date for the Xmas meal and possible an alternative date for the cancelled BBQ so please keep checking back although I will try and keep in touch and inform you as well.

Secondly, apologies that I had to cancel the BBQ, both my daughter and I awoke on the Sunday morning absolutely full of cold and I didn't wish to share the love in the form of germs with you all. I hope to rearrange something soon.

Finally, if you receive emails from us, please could you save the info@cfsunite.co.uk as one of your contacts. Recently when sending emails to some of you, it gets declined as your email thinks it is spam (this is especially the case for BT internet addresses). If you can do this as it is a lot of hassle and time to have to resend the email individually to those that has bounced back. P.s If you have not received any emails from us in the past three months check your spam.

That is it for now. Apologies if I am slacking lately, I am exhausted with having a young baby and my anxiety is playing up so I am having to take things slowly and some days cannot face things. Please be patient and I will get there.

Thanks G x

August Monthly Meeting and BBQ

posted 6 Aug 2018, 13:20 by Gemma Richards   [ updated 6 Aug 2018, 13:27 ]

Good evening,

I hope that you are keeping as well as can be expected and not struggling too much in the heat now that it is back. I believe it is going to get cooler again soon so for those of you struggling with the heat I hope there will be some relief soon. Just 2 notices;

Meeting
Tomorrow is our monthly meeting. Just a reminder that our meetings run from 13.30 till 15.30pm and for THIS MONTH ONLY we will be using the classroom at Galaxsea Divers, which is at 22 Hines Road, Ipswich, IP3 9BG, which has parking available. In light of being at a different premises this months meeting will be more of a social with nibbles and a raffle and time to talk to each other. If possible can I ask you to bring something to share with the nibbles and a raffle prize but only if you can.  If you get lost or need anything I will be available on my mobile, I will call you back if I am driving.

CFS Unite BBQ
I would like to invite you and your family and friends to join me this Sunday the 12th August to the CFS Unite annual BBQ. It takes place at mine (I live in IP2) from 1pm till 5pm, stay for as long as you are able.  We will supply rolls, burgers and sausages  (including Veggie), and a couple of cheesecakes for dessert however we ask if you want more to eat please bring it along with your own drink and if feasible a chair (I have about 8 to use). I do ask that you let me know if you intend to join us and if you have any dietary requirements so we have enough burgers and sausages etc....I need to know final numbers by Saturday night so I can go shopping Sunday morning.

That is it for now. I hope to see you some time this week either tomorrow or Sunday or even better both.

Take care and as always thinking of you.
--
Kind regards, best wishes and gentle hugs

Gemma and The CFU Team
xxx

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