Who are we ?

FM (Fibromyalgia),
ME (Myalgic Encephalomyelitis) and
CFS (Chronic Fatigue Syndrome)
Support Group, Torpoint, S.E.Cornwall.

We are a group of both sufferers and carers affected by the conditions of Fibromyalgia (FM), Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), we are an open group and welcome anyone with a wish to discuss their problems for the benefit of support from likeminded people with similar and identical experiences. Membership of the group is open to any person living or located in the Torpoint and South East Cornwall area who is interested in helping the Group to achieve its aims. We currently have members from all around the South East of Cornwall and our committee consists of members from Torpoint, Pensilva (Liskeard) and Downderry. We meet in the CHATlink building, The Old School House, Macey Street, Torpoint, PL11 2AJ, on the first Friday of each month from 11 am until 1 pm.

Fibromyalgia is a long-term chronic condition of widespread pain, profound fatigue and sleep deprivation. Fibromyalgia is a common illness - up to 1 person in every 25 may be affected.. In fact, it is more common than rheumatoid arthritis and can even be more painful. If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.
The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used the most. The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy - as if someone just "pulled the plug". People experience hypersensitivity to pain, touch and other stimuli, such as smell, weather, temperature and sensory overload.
Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with fibromyalgia, but it shows up in people of all ages.
There are treatments available which can alleviate some of the symptoms but the majority of these are in the private sector and as most sufferers are forced into early retirement, or cannot work at all, the cost of such treatment is prohibitive. Extreme fatigue, pain and sleep deprivation often mean that people with fibromyalgia are unable to undertake everyday tasks, like dressing, shopping, cooking; are often unable to work; and frequently require assistance with personal care. Fibromyalgia has a devastating effect on the lives of people with the condition and their families.
Some doctors treat fibromyalgia (FMS) and chronic fatigue syndrome (CFS) separately, while others think they are actually the same thing – or at least, variations of the same condition. According to the Arthritis Foundation, research shows that 50 to 70 percent of people with one diagnosis also fit the criteria for the other. It is generally thought that fibromyalgia is a neurological condition, caused by faults in how pain is transmitted through the central nervous system.

eMail via Mike at the Fibro ME CFS support group

Constitution of the Torpoint FMS, CFS & ME Support Group

Adopted: 05/06/2015 ~ (the following is an extract).

The Aims of the Group shall be:

To support residents in the Torpoint and South East Cornwall area with the above conditions with a monthly meeting on the first Friday of the month. The meetings will provide the members a chance to share their experiences with a view to helping each other. There will be a number of health and well being professional guest speakers throughout the year.

eMail via Mike at the Fibro ME CFS support group

Membership

(a) Membership of the Group shall be open to any person living or located in the Torpoint and South East Cornwall area who is interested in helping the Group to achieve its aims, willing to abide by the rules of confidentiality within the Group and willing to pay any subscription agreed by the group members.

(b) Membership shall be available to anyone without regard to gender, race, nationality,disability, sexual preference, religion or belief. Group and notify the Group’s Secretary of that person’s name.



Management

(a) The Group shall be administered by the Group Facilitator, Treasurer and Secretary.

Location and Hours

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Chatlink Building, The Old School House, Macey Street, Torpoint, Cornwall, PL11 2AJ
1st Friday every month 11:00 - 13:00

Our website address

is www.FM-ME-CFS-Torpoint.uk please visit and join in on our discussion board / blog.

Our Group

Members


Tracey is the facilitator of the group.

Tracey Mahoney
Torpoint.


Gordon is the groups treasurer.

Gordon Nash
Millbrook.


Jan is Gordon's good lady.

Jan Nash
Millbrook.


Maureen is the groups event organiser and chief fund-raiser.

Maureen Coombs
Torpoint.


Michael is the groups Secretary, IT and publicity co-ordinator.

Dr. Michael Doig
Downderry.


Member.

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Sandra Spendlove
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Member 11

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Member 12

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Our group, FM-ME-CFS Torpoint, have now completed the °EYE SPY° competition

The object of the game was to find the 'Odd' or 'Random' item in each of the shop windows. to play the game write down what the item is in the table of the form, next to the name of the shop it is in. The game started on Saturday 12th November and ran for the following two weeks.
The winner, called out on Saturday 26th November, when the town's Christmas lights were turned on, winning a Christmas Hamper was 5 year old Mikey Bright from Torpoint, pictured here with the prize. by kind permission of his parents
Grateful thanks to all the establishments that helped by taking part.

Participating Establishments

Title Address Genre Telephone
1 Emporium 25 Fore St Gifts 07913 811247
2 Kardkadia 2-4, Tamar St Wedding services 01752 814247
3 Pet Shop 18A Macey St Pets 01752 657177
4 Boots the chemist 16 Fore St Chemist 01752 812591
5 Torpoint Carpets 62 Fore St Carpets 01752 813530
6 First Choice 19 Fore St Travel Agents 01752 812818
7 Fish Shop 21 Fore St Fishmongers 01752 814040
8 Gliddons 22 Fore St Butchers 01752 812453
9 Warrens 49 Fore St Bakery 01752 812436
10 Co-op 53 Fore St General Store 01752 812429
11 St Lukes 56 Fore St Charity Shop 01752 813426
12 Lloyds 57 Fore St Bank 03450 725555
13 Fruit & Veg Shop 59 Fore St Green Grocers 01752 814480
14 Studio 2 60 Fore St Womens Clothing 01752 815804
15 Price Busters 61 Fore st MiniMart 01752 815092
16 Dashers Ltd 63 Fore St Pasties 01752 812775
17 McColls 66 Fore St Newsagents 01752 816273
18 Miller Countrywide 67 Fore St Estate Agents 01752 648133
19 CHAT 3 Fore St Charity Shop 01752 815626
20 VIP Vapers 71 Fore St Vapers / Tobacconist
21 Ideal Homes 1 Fore St Estate Agents 01752 812333
22 Hearts 1a, Fore St Cafe 01752 816442
23 Green Sails 3a Fore St Florist 01752 815587
24 Mane Attraction 4 Fore St Hair Salon 01752 815808
25 Beauty Within 5 Fore St Beauty Salon 01752 816266
26 Torpoint Hardware 9 Fore St Home Improvements / Ironmongers 01752 812477
27 Alternative Styles 14 Fore St Hair Salon 01752 429065
28 Cycle Action 1a Harvey St Cycle Shop 01752 815571
29 Rossons Men's Barbers 2 Elliot Square Barber 01752 814401
30 Luxstow Vets 4 Eliot Square Vetrenary Practice 01579 342120


Mikey Bright

Mikey Bright

Mikey Bright

Fibro/ME/CFS Awareness Day

Anne-Marie once again had her hair dyed for the occassion and was part of the team collecting outside Sainsburys in Torpoint on the 3rd September this year (2016)

~ Ane-Marie

Last Years' Programme - Awareness Day 2015
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2

History

The group has regular visits and discussions with people of special interest to our position


Dawn Allen from the CAB ~

Visited the group for the August meeting to discuss the ESA grouping and application process

Benefits for people who are sick or disabled

This page of the CAB Website identifies other areas of help available for disabled persons.

Employment and Support Allowance (ESA)

Employment and Support Allowance (ESA) Support Group is for people who have an illness, health condition or disability that makes it difficult or impossible to work.
The CAB online guide to the ESA form filling process can be found at the CAB ESA page

Personal Independence Payment (PIP)

We were pleased that the lovely Dawn Allen from the CAB came back as requested for our 4th November meeting, and dscussed with us the methods and pitfalls to watch for while applying for PIP which is the replacement for the original Disabled Living Allowance (DLA).
The CAB online guide to the PIP form filling process can be found at the CAB PIP page


Citizens Advice SE Cornwall

AGE UK

for details helping to apply for attendance allowance ~ applicable for persons over retirement age (65). Those under this age would be required to apply for Carers Allowance.

Blue Badge Scheme

The Blue badge Scheme is usually administered through the local council and their is a service charge for the issue of the badge, for help on how to apply for a Blue Badge ~ visit the Gov website.

Turn2Us ~

is a charity based website that has a Benefits Calculator that will help identify all the benefit entitlements for your condition and also suggest sources of grants that may be available. Our member Mike Doig is a trained and registered user of the site should you require any assistance.

Sheryl Murray MP

(O)n the 2nd September the group was pleased to welcome our local MP for South-East Cornwall, Sheryl Murray and had a very fruitful discussion with her.

Group photo with Sheryl Murray MP



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a message from the FM-ME-CFS Torpoint Support Group

Useful Links

Sheryl Murray MP

S E Cornwall
party: Conservative

our Facebook page

Author: Michael Doig
" " " : Henry Wood
" " " : Anne-Marie Vincent
Fibromyalgia Action UK




Chatlink Torpoint





Citizens Advice Bureaux


Author: Jennifer De-Ville


Myalgic Encephalomyelitis (ME)

Parliamentary Group Registration


Age UK

Attendance Allowance


http://www.ageuk.org.uk/search1/?keyword=attendance+allowance&nation=ageuk_en-GB

Newsletter

November 2016

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Fibromyalgia - Myalgic Encephalopathy
Chronic Fatigue Syndrome
Torpoint Support Group ~ South-East Cornwall
Chatlink Building, The Old School House, Macey Street, Torpoint, Cornwall, PL11 2AJ

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