FLU VACCINE AND ME/CFS - INFORMATION FOR 2020 2021 - ME Association

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FLU VACCINE AND ME/CFS - INFORMATION FOR 2020 2021 - ME Association
October 2020

                     FLU VACCINE AND ME/CFS
                     INFORMATION FOR 2020 – 2021

ME CONNECT HELPLINE: 0344 576 5326                                                  by Dr Charles Shepherd
                                                                                    Hon Medical Adviser to the MEA

 COVID-19 AND FLU VACCINATION THIS YEAR
 One very important additional issue this year is the impact of
 COVID-19 and the Department of Health’s decision to encourage far
 more people to have this protection - as a dose of flu plus COVID-19
 is going to be a very nasty combination of infections to have.
 So people with ME/CFS are going to have to take COVID-19 into
 consideration when deciding whether they are going to have a flu
 vaccination - as COVID-19 isn’t going to go away and there won’t be
 a vaccine available for widespread public use until the worst of any
 2020-2021 flu epidemic is over.”

INTRODUCTION                           WHAT IS THE SCIENCE
Seasonal flu (also known as            BEHIND FLU VIRUSES
influenza) is a highly infectious      AND FLU VACCINES?                         Flu Vaccine and ME/CFS -
illness caused by several types                                                  Information for 2020 - 2021 was
of flu virus. It causes up to 30,000   There are three types of influenza        written by Dr Charles Shepherd
deaths per year in England alone.      virus. Type A viruses are the most        (pictured above), Trustee and
The flu virus spreads rapidly          dangerous and cause outbreaks             Hon Medical Adviser to The ME
through small infected droplets        in most years. Type B viruses             Association.
that are coughed or sneezed into       tend to cause less severe disease
the air by an infected person.                                                   © The ME Association, 2020
                                       and smaller outbreaks, often in
Even people with mild or no                                                      All rights reserved.
                                       children. Type C viruses cause a
symptoms can infect other people.      minor respiratory illness.                Reproduction, in full or in part,
So the spread of infection is just                                               is not allowed without the
the same as with COVID-19.             Type A viruses are sub-divided
                                                                                 written permission of The ME
                                       by the type of immune system
As there is no simple answer as                                                  Association.
                                       markers known as antigens that
to whether you should have flu         are found on the surface of
vaccine if you have ME/CFS,            the virus. These are known as           viral sub-types. So the changes
the purpose of this leaflet is to      haemagglutinin (H) antigens and         are constantly monitored by the
provide information on all aspects     neuraminidase (N) antigens. These       World Health Organisation in
of flu vaccination in relation         markers help the virus to invade        order to try and make sure that
to ME/CFS. You and your doctor         the body cells. 18 types of H           each year’s flu vaccine is going
can then decide if you ought to        antigen and 11 types of N antigen
have this protection.                                                          to be effective against new and
                                       have been identified so far.            emerging strains of flu virus.
                                       The surface antigens constantly         Studies have shown that flu
                                       change their identity by what           vaccine reduces the risk of
                                       is called antigenic drift (which        catching flu. However, protection
                                       involves minor changes from             will not be complete and will vary
                                       season to season) and antigenic
                                                                               from person to person. Protection
                                       shift (where a major change and
                                                                               gradually decreases over time
                                       new subtype of virus emerges).
                                                                               and flu strains change over time.
                                       Previous exposure to flu or flu         So new vaccines have to be
                                       vaccination will not provide            made each year and people at
                                       protection against these new            increased risk are encouraged to

      The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF n 01280 818 963 l
         www.meassociation.org.uk n admin@meassociation.org.uk n Registered Charity Number 801279
       © ME Association 2020. Reproduction is not allowed without the written permission of The ME Association

                                                         1
FLU VACCINE AND ME/CFS - INFORMATION FOR 2020 2021 - ME Association
FLU VACCINE AND ME/CFS: INFORMATION FOR 2020 – 2021                                                         October 2020

be vaccinated every year. There is      according to age and due to
also research evidence to indicate      the decreased effectiveness in
that flu vaccine can reduce the         people over 65, their vaccine
risk of having a stroke.                also contains what is called an
                                        adjuvant.
Swine flu is the popular name for
influenza caused by a relatively        This is a substance that is added to
new strain of influenza virus A.        a vaccine to increase the body’s
It was responsible for the flu          immune response to the vaccine.
pandemic in 2009-10. The virus is
                                        n Children aged 2 to 17 are
officially known as influenza virus
                                        offered a live attenuated
A/H1N1pdm09.
                                        quadrivalent vaccine (LAIV). This
THE 2020 -2021 FLU                      gives protection against four
                                        strains of flu. The vaccine is given
VACCINES                                as a nasal spray.

For 2020-2021 there are three           n Adults aged 18 to 64 are offered          n Adults aged 65 and over will be
types of flu vaccine available.         a quadrivalent injected vaccine –           offered an adjuvanted trivalent
You will be offered the one that        the vaccine will have been grown            injected vaccine grown in eggs
is considered to be the most            either in eggs or cells (QIVe or            (aTIV).
effective for your age group.           QIVc), which are considered to be
The protection provided varies          equally suitable.                           WHO SHOULD HAVE A
                                                                                    FLU JAB?
 CAN SOMEONE WITH ME/CFS HAVE A FREE                                                Flu vaccine is offered free on the
 FLU JAB IF THEY CHOOSE TO DO SO?                                                   NHS to people in certain at-risk
                                                                                    groups. These are mainly people
 Having a chronic neurological disease is one of the                                who have a medical condition
 recommendations for having an NHS flu vaccination. ME/CFS is                       that places them at greater risk of
 classified by the World Health Organisation as a neurological disease.             developing serious complications if
 This classification is fully recognised by the Department of Health.               they catch flu.
 So The ME Association believes that people with ME/CFS should
 therefore qualify for a free NHS flu jab if they decide to have one.               The list includes a number of
                                                                                    pre-existing health conditions –
 If your GP is querying whether someone with ME/CFS is eligible to                  neurological and immunological
 have a free flu vaccination on the NHS you need to point out that the              diseases, heart and respiratory
 answer is YES they can because:                                                    diseases, pregnant women, and
 n People with a chronic neurological disease are eligible for an NHS               obesity.
 flu jab (NHS Green Book - Chapter 19, page 14) - https://tinyurl.com/              As a result of the COVID-19
 yf2spxpm                                                                           pandemic, the Department
 This publication is produced by Public Health England and provides                 of Health has widened the
 detailed guidance on the administration of all vaccines. The list of               list of people who should be
 medical conditions where flu vaccine is recommended makes it clear                 encouraged to have flu vaccine.
 that the list of neurological conditions (and other conditions) is not             So this now includes health and
 exhaustive and that decisions on individual neurological diseases can              social care workers, people in
 be made on clinical judgment.                                                      residential care homes, household
                                                                                    contacts of people who are
 n NHS England classifies ME as a neurological condition: https://                  shielding, and people aged 50 to
 tinyurl.com/y6h33er2                                                               64 - subject to vaccine availability.
 n Dame Sally Davies, former Chief Medical Officer at the Department                People who receive a Carer’s
 of Health, stated in 2014:                                                         Allowance, or are the main carer
 “As you know, the risk of serious illness from flu and consequent                  for a sick or disabled person,
 hospitalisation and death is higher among those with underlying                    are also eligible for a free NHS
 health conditions such as M.E.”                                                    vaccine.

 “We know that people with chronic neurological conditions are                      The best time to have a flu jab is in
 approximately 40 times more likely to die if they develop flu than                 the autumn – from mid-September
 individuals who have no other underlying health conditions.”                       onwards through until early
                                                                                    November. It takes two
 “The best way for people at risk from flu to protect themselves and
                                                                                    to three weeks for the
 their families is to get the flu vaccine. People with clinical risk factors
                                                                                    vaccine to become
 are eligible to receive the seasonal flu vaccine free each winter.”
                                                                                    fully effective.

                                                           2                   © ME Association 2020. Reproduction is not allowed
                                                                               without the written permission of The ME Association
FLU VACCINE AND ME/CFS - INFORMATION FOR 2020 2021 - ME Association
FLU VACCINE AND ME/CFS: INFORMATION FOR 2020 – 2021                                                      October 2020

                                         in the British Medical Journal. Both
WHAT ARE THE                             developed moderate to severe
POINTS IN FAVOUR OF                      symptoms and were unable to
                                         return to work.
HAVING A FLU JAB IF
                                         Reference: Should influenza be
YOU HAVE ME/CFS?                         mandatory for health- care
                                         workers? British Medical Journal
n Flu vaccination should provide
                                         (2013), 347:f6705. Online here:
a fairly high degree of protection
                                         https://tinyurl.com/y2rf3g7             An MEA website online poll carried
against the strains that are likely to
be around this winter.                                                           out in November 2008 asked how
                                         WHAT ARE                                the flu jab affected ME symptoms.
n Overall, the vaccine produces
a different degree of protection
                                         THE POSSIBLE                            There were 191 responses. 86 (45%)
                                                                                 reported no change; 52 (27%) said
each year – usually around 40% -         DISADVANTAGES?                          they were much worse; 42 (22%)
50%                                                                              said they were slightly worse; 7
                                         There are anecdotal reports
n Protection continues for about         of people with ME/CFS                   (4%) said they were slightly better
a year.                                  suffering a relapse, or even            and 4 (2%) said they were much
                                         developing ME/CFS, after                better after the jab.
n Anyone with serious health
problems in addition to ME/CFS           this vaccine. This is possibly          It is impossible to predict if
such as chest (especially asthma         because research into immune            someone with ME/CFS is going to
or bronchitis), heart, liver or kidney   system dysfunction in ME/CFS            experience an adverse reaction
disease, diabetes, a weakened            has found evidence of what is           to flu vaccine. However, some
immune system, or who is taking          called immune system activation.        doctors (myself included) believe
steroid medication, is particularly      This equates to a persisting and        that this may be more likely if you
at risk of developing serious            overactive immune response to           still have on-going flu-like/infection
complications from flu.                  a triggering infection. Vaccines        symptoms such as enlarged
                                         mimic the infection they are            glands, sore throats, problems with
n If you have already had a flu          designed to protect against and         temperature control, etc.
vaccine while suffering from ME/         will therefore trigger an immune
CFS, and not suffered any adverse        system response.                        WHAT ARE THE
effects, it is reasonable (but not
guaranteed) to assume that you           In a small survey carried out by        GENERAL CAUTIONS &
                                         The ME Association among its
should be OK this time round
                                         members a few years ago, seven
                                                                                 CONTRA-INDICATIONS
(although the viral make-up of the
vaccine is changed from year to          out of 21 people had no problems        Flu vaccine may be contra-
year).                                   at all with flu vaccine; 13 reported    indicated in people who have
                                         an exacerbation of symptoms             had a previous reaction, or are
n Serious adverse reactions are          ranging from mild (3) or moderate       allergic to eggs and poultry – as
very rare although minor transient       (7) through to a severe relapse in      the inactivated vaccine contains
problems such as malaise,                three cases. Interestingly, there       small amounts of egg and poultry
headache and muscle pain do              was also one report of a teenager       proteins. This is something you
sometimes occur. A full list of          who noticed a slight improvement        need to discuss with your doctor
potential side-effects is listed later   in symptoms following vaccination.      because there are now egg-free
in this leaflet.
                                                                                 vaccines available.
The only published research study
                                                                                 You should also inform your doctor
into adverse reactions to flu
                                                                                 if you are allergic to any of the
vaccine in people with ME/CFS
                                                                                 possible vaccine components and
concluded that people with ME/
                                                                                 preservatives: eg, formaldehyde,
CFS were no more likely to have
                                                                                 gentamicin sulphate and sodium
a serious adverse reaction than
                                                                                 deoxycholate. One further contra-
people receiving this vaccine for
                                                                                 indication is having an active
recommended reasons.
                                                                                 febrile illness.
Reference: Influenza Vaccination:
                                                                                 Some flu vaccines used to include
Is it appropriate for Chronic
                                                                                 thiomersil – a controversial
Fatigue Syndrome? (2002)
                                                                                 mercury-containing preservative.
American Journal of Respiratory
                                                                                 This has now been gradually
Medicine (2002),1: 3-9).
                                                                                 withdrawn from
However, two case reports                                                        vaccines following
involving health workers who                                                     concerns that it could
developed ME/CFS after swine flu                                                 cause neurological
vaccination have been reported                                                   problems.

                                                          3                 © ME Association 2020. Reproduction is not allowed
                                                                            without the written permission of The ME Association
FLU VACCINE AND ME/CFS - INFORMATION FOR 2020 2021 - ME Association
FLU VACCINE AND ME/CFS: INFORMATION FOR 2020 – 2021                                                     October 2020

                                                                                caught by contact with infected
WHAT ARE THE                                                                    surfaces, including hands – so
RECOGNIZED SIDE-                                                                regular handwashing with soap
                                                                                – as for COVID-19 – is a sensible
EFFECTS?                                                                        precaution to take.
Common and normally transient                                                   Sneezing into your elbow – not the
side-effects include a slight                                                   palm of your hand – reduces the
temperature and aching muscles                                                  risk of spreading the virus.
for a couple of days after having
the jab. Your arm may also feel a
bit sore. If you do experience a
                                                                                RESEARCH INTO FLU
                                         The use of a specific adjuvant
sore arm after vaccination, use
                                         known as AS03 – an emulsion
                                                                                VACCINES AND ME/CFS
a heat pack or warm compress
                                         that was added to stimulate the        The effect of influenza vaccination
on the area and take a painkiller
                                         immune response in a previous          on ME/CFS was examined in an
such as paracetamol or ibuprofen.
                                         vaccine – has been linked to           Australian pilot study which found
Serious side-effects are very rare.
                                         narcolepsy.                            that vaccination is accompanied
Recognised potential side-effects                                               by a degree of immune system
listed in the literature provided        WHERE CAN YOU HAVE                     dysregulation in ME/CFS patients
to doctors include local redness,        A FLU JAB?                             compared to healthy controls and
swelling, pain, bruising, fever,                                                that the vaccine has the ability
malaise, shivering, fatigue,             Most people have a flu jab at their    to increase cytotoxic activity and
headache, sweating, myalgia              GP surgery – where it is free if you   pro-inflammatory reactions post-
(muscle pain), arthralgia (joint         have one of the conditions listed      vaccination (Brenu et al 2012).
pain), generalised skin reactions        above where flu vaccination is
(itching, urticaria}, neuralgia (nerve   recommended by the NHS. If you         However, Prinsen et al (2012) found
pain), paraesthesiae (abnormal           are on the list of people who are      that humoral and cellular immune
sensations in the skin).                 eligible you will probably receive     responses following influenza
                                         a letter asking you to book an         vaccination were comparable
As many of these side-effects are                                               in ME/CFS patients and healthy
                                         appointment at one of their flu
also ME/CFS symptoms, this may                                                  controls.
                                         vaccine clinics.
help to explain why some people
with ME/CFS feel worse after a flu       Some community pharmacies offer        References: Brenu EW et al.
vaccine.                                 flu vaccination and it is now widely   (2012). The effects of influenza
                                         available for a small charge (or       vaccination on immune
Nasal spray side-effects include a                                              function in patients with chronic
                                         free if your are eligible) at many
runny or blocked nose, headache,         pharmacies such as Boots and           fatigue syndrome/myalgic
tiredness and loss of appetite.          Lloyds.                                encephalomyelitis. International
More serious side-effects                                                       Journal of Clinical Medicine, 3, 544
                                         GP surgeries and pharmacies will
include convulsions, transient                                                  – 551.
                                         be following the social distancing
thrombocytopenia (lowered                rules and only seeing one person       Prinsen H et al. (2012) Humoral and
level of platelets in the blood),        at a time. So most will require        cellular immune responses after
encephalomyelitis, vasculitis            some form of advance pre-              influenza vaccination in patients
(blood vessel inflammation),             booking. If you are housebound,        with chronic fatigue syndrome.
neuritis (nerve inflammation) and        you can ask your GP surgery if         BMC Immunology, 13, 71.
Guillain Barre syndrome. These           someone, possibly a practice
complications are much more              nurse, could come out and do the       PNEUMOCOCCAL
unusual.                                 vaccination in your own home.
                                                                                VACCINATION
The flu vaccine cannot cause flu.
                                         HOW CAN YOU                            This vaccine is now being offered
                                         REDUCE THE RISK OF                     to people over the age of 65 and
                                                                                those with other health conditions
                                         CATCHING FLU?                          (e.g. heart and lung disease) that
                                                                                place them at increased risk from
                                         Children are a major source
                                                                                this bacterial infection. It provides
                                         of infection – because flu is
                                                                                very valuable protection against
                                         essentially a disease of childhood.
                                                                                an infection that can cause a
                                         So, just as with COVID-19, keep
                                                                                severe type of pneumonia.
                                         a safe distance – at least two
                                         metres – from anyone who is            I know of a small
                                         coughing, sneezing, or may have        number of people
                                         flu, and avoid crowded public          with ME/CFS who
                                         places. The virus can also be          have received the

                                                          4                © ME Association 2020. Reproduction is not allowed
                                                                           without the written permission of The ME Association
FLU VACCINE AND ME/CFS - INFORMATION FOR 2020 2021 - ME Association
FLU VACCINE AND ME/CFS: INFORMATION FOR 2020 – 2021                                                                                                                                                                            October 2020

pneumococcal vaccination and
we have not received any reports
of significant adverse reactions
occurring to this vaccine so far.
                                                                                        ME CONNECT
However, that is not a guarantee
that you will not have any side-
effects, or an exacerbation of your
ME/CFS symptoms.
If there are good indications                We’re here to help                                                           0344 576 5326
for having this protection (and
a pneumococcal infection
would probably cause a                                                                                                       Do you need to talk?
significant relapse of ME/CFS),                                                                                        ME Connect is the telephone helpline
this is something that you should                                                                                        service of the ME Association.
seriously consider and discuss with                                                                                 It provides information and support for
your GP.                                                                                                                   people with ME and those
                                                                                                                         who live with or care for them.
Please note that it is normally
sensible to defer being vaccinated                                                                                       ME Connect provides a safe and
if you are currently having any                                                                                        understanding environment for people
                                                                                                                        with ME so that they know they are
significant flu-like symptoms (i.e.
                                                                                                                            being heard and understood.
sore throats, tender glands, feeling
feverish) in relation to your ME/CFS
More information on                                                                                                                                                “Thank
                                                                                                                                                             you for being there,
pneumococcal vaccine can be                                                                                                                                you provide a wonderful
found here: https://tinyurl.com/                                                                                                                                   service”
y928j2xw
                                                                                                                                                          “MEConnect gave me
                                                                                                                                                        information, reassurance
FURTHER                                                                                                                                                      and the tools to
                                                                                                                                                                  cope”
                                           ME Connect is a member of the
INFORMATION                                    Helplines Partnership
                                           which promotes high standards.
The NHS website gives helpful and
more detailed general guidance
on flu vaccine and how to obtain
                                                           CALL 0344 576 5326
flu vaccine:                                         10am-12noon, 2pm-4pm, 7pm-9pm
https://tinyurl.com/y2tdpvna
                                                           every day of the year
Boots flu vaccine service:
https://tinyurl.com/y5v6lcdo                      Calls cost the same as other standard landline numbers (starting 01 or 02).
                                                        If you have a call package for your landline or mobile phone then
Lloyds flu vaccine service:                                   calls will normally come out of your inclusive minutes.

https://tinyurl.com/y3rhckqv

                                       The ME Association
                                                                                                                                                                                                      September 2020                                                                July 2020                                                 August 2020

                                                                                                                                                                                    UNIVERSAL CREDITNUTRITION           EXPLAINED ASSESSMENT

 DISCLAIMER
                                                                                                                  ME CONNECT
                                                                                                                  Information and Support Line                                                                         IN ME/CFS
                                                                                                                                                                                    A benefits briefing from The ME Association

                                       website shop:
                                                                                                                                                                                                                                                                                by Ann Innes
                                                                                         ME CONNECT HELPLINE: 0344 576 5326                                                                             by Hilary Briars                                                                                                    by Dr Charles Shepherd

                                                                                                                                                          U
                                                                                                                                                                                                        ME Connect Manager                                                                                                          Hon Medical Adviser to the MEA
                                                                                                                                                                   niversal Credit (UC) is a              Universal Credit will normally be
                                                                                                                                                                                                                                                                                     term medical conditions. And
                                                                                         INTRODUCTION                                                              payment to help    ME  withCONNECT
                                                                                                                                                                                                your      paid monthly in a single payment,
                                                                                                                                                                                                                        ARE SOME PEOPLE                                              having any form of malnutrition
                                                                                                                                                                   living costs. It’s normally            directly to the person making the
                                                                                         Neil Riley, Chairman of The ME                               paid monthly and you Hilary      may be    able ME claim.
                                                                                                                                                                                               Briars,     Connect’s    WITH M.E. AT RISK
                                                                                                                                                                                                                    If you think you will have a                                     has an important adverse effect
                                                                                         Association, writes:                                         to get it if you’re on a Manager,
                                                                                                                                                                                      low income,   writes:problem managing your money,                                              on health. This includes decreased
                                                                                                                                                                                                                        OF BECOMING

 Medical information contained
                                                                                                                                                      out of work or cannot work because you can ask for fortnightly or even                                                         immune system function, decreased
                                                                                                                When you                                                              I am very proud of the fact that
                                                                                                                                                      you are disabled.                                                                                                              muscle strength, delayed wound
                                                                                                                are ill with                                                          ME Connect takes thousands of     MALNOURISHED?
                                                                                                                                                                                                          weekly payments. You can also ask
                                                                                                                                                                                                          for your rent to go straight to your                                       healing and an increased risk of
                                                                                                                a chronic                             It is a relatively new, non-taxable
                                                                                                                                                                                      calls each year and I’m equally
                                                                                                                                                                                                          landlord.                                                                  falls.

                                       The ME Association has the largest
                                                                                                                condition like                        benefit for people of working   proud of our volunteers who There is a great deal of positive
                                                                                                                ME there are                          age that has been introduced    respond to             will be at thediscussion
                                                                                                                                                                                                  to theseIt calls.              DWP’s discretionon ME/CFS internet                  It will also cause a further reduction
                                                                                                                many things                           replace means tested benefits                       as to whether they   forums  allowabout
                                                                                                                                                                                                                                                these  the benefits of               in energy levels and exacerbate

 in this leaflet is not intended
                                                                                                                                   about; giving help      to those Council
                                                                                                                                                      (excluding          who      TaxWe   are all really pleased to be
                                                                                                                                                                                        Reduction,                             unproven         special diets, restrictive
                                                                                                                you want to                                                                               requests. So any         written evidence                                  cogni-tive problems – both of
                                                                                                                                   need it at a difficult
                                                                                                                                                      which  time     in claimed
                                                                                                                                                                 is still their       able to help
                                                                                                                                                                                    separately     via so many     people and   with exclusion diets, and dietary
                                                                                                                know. What                                                                                from a health professional              to back                            which areCredit
                                                                                                                                                                                                                                                                       This guide to Universal      very relevant in ME/CFS.
                                                                                                                                   lives.             your local authority). ME and those who                  care for them.
                                                                                                                treatments                                                                                up your reasons      supplements.
                                                                                                                                                                                                                                  for needing help                     was written by Ann Innes,
                                                                                                                                                                                      However, we would like to help                                                                 So a proper nutritional assessment,
                                                                                                                                   Our volunteers do  UCthatis inevery                                    managing your finances or for

                                       selection of ME/CFS advice leaflets
                                                                                                                work, where                                        its infancy andmore legislation                                                                     (pictured above), consultant
                                                                                                                                                                                              people and thus we need          At the same time, very little                         which includes both food and
                                                                                                                can I find         day. Why? Because         it is intensely
                                                                                                                                                      is changing         all the time.  Therefore,       rental payments to your landlord,                            welfare rights adviser to The
                                                                                                                                                                                      more    volunteers to take calls.attention is being paid to the                                fluid intake, should form part of
                                                                                         a doctor who understands ME,              rewarding for them pleaseto help
                                                                                                                                                                  be awareothersthat the                  would be useful to submit with your                          ME Association.
                                                                                                                                                                                                                               dangers of cutting out or reducing                    the medical assessment and on-

 to be a substitute for
                                                                                         where can I get guidance on               and they want toinformation
                                                                                                                                                         contributein this leaflet,   Thewhilst           request.In a short
                                                                                                                                                                                            work is rewarding.
                                                                                                                                                                                                                               the intake of specific food               groups
                                                                                                                                                                                                                                                                       Ann  has beengoing
                                                                                                                                                                                                                                                                                       supporting
                                                                                                                                                                                                                                                                                              care of everyone, especially       This guide to nutrition in Severe
                                                                                         filling in my benefit claim. Even         something in their    lives to
                                                                                                                                                      correct       atsociety.        callcould
                                                                                                                                                                        time of writing,    you cango help a person with                                               people with ME/CFS      to claim
                                                                                                                                                                                      their problem orCAN   help a Idistressed
                                                                                                                                                                                                                         CLAIM
                                                                                                                                   By helping othersout it in                                                                  such      as  dairy    or   wheat.     And            those    with  moderate   or severe ME/     ME/CFS was written by Dr
                                                                                         more important is to hear another                                   ofturn
                                                                                                                                                                 dateenriches
                                                                                                                                                                          at any time.
                                                                                                                                   their lives.                                       caller get through their day. With       people with more severe the              ME benefits they
                                                                                                                                                                                                                                                                                     CFS. are
                                                                                                                                                                                                                                                                                            Andentitled
                                                                                                                                                                                                                                                                                                  it must involve a dietitian,   Charles Shepherd (pictured
                                                                                         voice, someone who understands
                                                                                                                                                                                                          UNIVERSAL                    CREDIT?

                                       in the UK on:
                                                                                                                                                      For the very latest information                                                                                  to since 2012 preferably
                                                                                                                                                                                                                                                                                      – when sheone  waswho has experience
                                                                                         how ME affects everyday life.                                                                so muchyou  information to hand may       and have significant problems                                                                    above), Trustee and Hon
                                                                                                                                   I hope you will come        and join
                                                                                                                                                      can access          the Govt. website      here:                         in obtaining groceries, preparing       employed byof  the   Stockport
                                                                                                                                                                                                                                                                                         seeing   peopleMEwith ME/CFS.
                                                                                         Someone who will listen.                                                                     an understanding    You ofmust
                                                                                                                                                                                                                  ME, be we ofcanworking age. This                                                                               Medical Adviser to The ME
                                                                                                                                   our volunteer team.       They are a
                                                                                                                                                      https://www.gov.uk/universal-credit                                                                              Group.
                                                                                                                                                                                      really help people. usually means meals,              and   even 18 eating a full                                                          Association.

 medical advice or treatment
                                                                                                                                   lovely friendly bunch. Many have                                                             you must       over                                  The assessment should take
                                                                                         The role of ME Connect is simple. It                                                                                                  meal.
                                                                                                                                                      Means-tested           benefits are those                                                                        She is now in account
                                                                                                                                                                                                                                                                                     private practice
                                                                                         is there to support people with ME        or have had ME and         all of them             So many callers but  say under      pension
                                                                                                                                                                                                                to us “Thank           age to claim.                                              of all the factors that        © The ME Association, 2020
                                                                                                                                                      benefits awarded to households                      However,       in some     circumstances           it        helping disabled people
                                                                                         and their carers to make informed         understand the illness. You’ll make                you so much for giving your time,        All ofit this could be having an                      increase the risk of malnutrition in        All rights reserved.
                                                                                                                                                      on a low income with savings and                                                                                 access benefits, social care
                                                                                         choices. It is there to listen to a       friends and you’ll learn a lot. Just               is just so nice to isspeak
                                                                                                                                                                                                             possible     to claim
                                                                                                                                                                                                                     to someoneadverse fromeffect
                                                                                                                                                                                                                                               age 16.    onFortheir overall         vulnerable groups of people with
                                                                                                                                                      capital below £16,000.                              example,       people      estranged        from             support, appropriate housing                              Reproduction, in full or in part,
                                                                                         caller and try to understand all the pick up a phone or email us. We                         who really understands what Ihealth.       am         So do we need to start                   long-term      medical   conditions.
                                                                                                                                                                                                          their parents orlookingwho are                               and other services.                                       is not allowed without the
                                                                                         issues they are facing. Each year it      would love to hear Thefrom        you.
                                                                                                                                                             means-tested             going
                                                                                                                                                                                 benefits   UCthrough.”
                                                                                                                                                                                                 has                                         atdisabled
                                                                                                                                                                                                                                                 diet and nutritional                Physical factors include the
                                                                                                                                                                                                          may be able to claim from 16 years                           © The copyright for this leaflet                          written permission of The ME
                                                                                                                                                      replaced are:                                                            status in ME from both a clinical

 from your doctor.
                                                                                         does this for thousands of people.

                                       Medical Management
                                                                                                                                                                                      Many of our volunteers
                                                                                                                                                                                                          of age. have                                                               presence of nausea and/or loss              Association.
                                                                                         Of all that The ME Association                                                                                                        and research point of view?             remains vested with Ann Innes.
                                                                                                                                                                                                                                                                                     of appetite, swallowing difficulties
                                                                                         does for people with ME it is our             “It is really ngoodIncome support (IS);appreciated the fact that they
                                                                                                                                                                  that you                                From    15
                                                                                                                                                                                      can do their training and take   May    2019,    if you   are    in  a                         and bowel symptoms that                   involve the ability to obtain food
                                                                                         Telephone Helpline of which I am                             n Income-based jobseeker’s
                                                                                                                                     offer this service,       it is such a calls in their owncouple         home.and   SO WHAT’S THE
                                                                                                                                                                                                                       Othersone member is below
                                                                                                                                                                                                                                                                    You must not bemay       affect both
                                                                                                                                                                                                                                                                                       in education         digestion and
                                                                                                                                                                                                                                                                                                       unless                  and prepare meals.
                                                                                         proudest. It is what a charity is all                        allowance (IBJSA);                                  and    the   other    above      pension      age,
                                                                                                                                    relief to speak ntoIncome-related
                                                                                                                                                             someone whoemployment    have said that helpline work has
                                                                                                                                                                                                          the couple
                                                                                                                                                                                                                        ANSWER?
                                                                                                                                                                                                                            will no longer be able to
                                                                                                                                                                                                                                                                    you are a parent,absorption      of food.
                                                                                                                                                                                                                                                                                         disabled student
                                                                                                                                                                                                                                                                                                                               The assessment should record the
                                                                                                                                                                                      given them  anda sense    of purpose                                          or a young person     on a non- factors can include
                                                                                                                                               understands.”
                                                                                                                                                      support allowance (IRESA);                          claim    pension
                                                                                                                                                                                      and a feeling of job satisfaction.        credit    until  they     have
                                                                                                                                                                                                                               This is a very important advanced
                                                                                                                                                                                                                                                                                     Psychological
                                                                                                                                                                                                                                                                     question. course (e.g. A-levels,                          person’s  normal daily intake of

                                       Mental Health
                                                                                                                                                                                                          both exceeded working age and                                              depression – if this occurs – and its     food and fluid in terms of total
                                                                                                                                                      n Housing benefit (HB);Please do join us;                                The whole issue of nutritional       GCSEs, NVQs, etc). For a full list
                                                                                                                                                                                                          willyou   will be
                                                                                                                                                                                                               instead         given
                                                                                                                                                                                                                            have    to claim Universal                               effect on appetite. Social factors        calories, carbo-hydrates, proteins,
                                                                                                                                                                                                                               assessment in people with                 ME/CFS,
                                                                                                                                                                                                                                                                    of non-advanced and advanced
                                                                                                                                                      n Child tax credit (CTC)        a warm welcome!     Credit (if they meet the eligibility                                                                                 fats, sugars, vitamins and minerals

 The ME Association
                                                                                                                                                                                                                               along with the risk of malnutrition  courses, please follow this link
                                                                                                                                               CALLn OUR  Working tax credit (WTC).
                                                                                                                                                                                                          criteria).
                                                                                                                                                                                                                               in those with more severe                ME/CFS,
                                                                                                                                                                                                                                                                    to the  relevant page at the UK                            and micronutrients.
                                                                                                                                            ME CONNECT                                “Thank you soYour       much      for giving
                                                                                                                                                                                                                  savings and        capital must
                                                                                                                                                                                                                               is something          that I will be Government
                                                                                                                                                                                                                                                                        raising    website: https://tinyurl.                   For example, although fruit and
                                                                                                                                                      This means that if you are making
                                                                                                                                            SUPPORT            LINE                      up  your    time beto  work
                                                                                                                                                                                                               under      on   this
                                                                                                                                                                                                                         £16,000.
                                                                                                                                                                                                                               during Savings     and
                                                                                                                                                                                                                                           the preparation          com/y2gx58nb
                                                                                                                                                                                                                                                                     of the new                                                vegetables    are very healthy they

                                       ME Connect
                                                                                                                                                      a new       claim or if you are currently
                                                                                                                                                                                                          capital includeNICE    any guideline
                                                                                                                                                                                                                                         cash, money     on in ME/CFS.
                                                                                                                                                      on any of these benefitsHelpline.   and have It is just so nice              to                               You must not already be in receipt                         contain very few calories. And
                                                                                                                                                                                                          accounts or other savings or capital
                                                                                                                                        0344 576 5326 certain changes of circumstances,                                                                             of Severe Disability Premium. This                         while dairy has become a ‘bad
                                                                                                                                                                                         speak to someone you mightwhohave  really
                                                                                                                                                                                                                               Asbutthisexcludes
                                                                                                                                                                                                                                           is such an   theimportant and

 recommends that you
                                                                                                                                                      you will be asked to claim UC                                                                                 is because there is currently no                           food’ in the eyes of some it is
                                                                                                                                                                                                          home in whichneglected you live. topic, I have prepared
                                                                                                                                                      instead of the old ‘means-tested’
                                                                                                                                               365 days a year                          understands what I am going            a fairly detailed reply. equivalent amount in UC. People
                                                                                                                                                                                                                                                                                                                               an important source of calories,
                                                                                                                                                      equivalent.                                         You must be on a low income.                              who currently receive a severe                             protein and calcium. Fluid intake
                                                                                                                                     10am-12noon, 2pm-4pm, 7pm-9pm                                     through.”               Firstly, it’s worth noting that                                                                 should be in the region of five or

                                       Diet & Nutrition
                                                                                                                                                                  The ME Association n 7 Apollo Office Court, Radclive         malnutrition        is surprisingly
                                                                                                                                                                                                                                         Road, Gawcott,          Bucks common
                                                                                                                                                                                                                                                                         MK18 4DF n 01280 818 963                              more cups per day of water, juice,
                                                                                                                                                                       www.meassociation.org.uk                                among peoplenwith
                                                                                                                                                                                                           admin@meassociation.org.uk                           chronicCharity
                                                                                                                                                                                                                                                           Registered     long- Number 801279                                  coffee, tea, etc.
                                                                                                   The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott,             Bucks MK18 4DF nn01280         818 963
                                                                                                                                                                    © ME Association 2020. Reproduction is not allowed without the written permission of The ME Association

 always consult your doctor or
                                                                                                      www.meassociation.org.uk n admin@meassociation.org.uk n Registered Charity Number 801279                                             The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF n 01280 818 963
                                                                                                    © ME Association 2020. Reproduction is not allowed without the written permission of The ME Association                          1         www.meassociation.org.uk n admin@meassociation.org.uk n Registered Charity Number 801279
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                                                                                  without the written permission of The ME Association
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