• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

charles shepherd

Senior Member
Messages
2,239
We have just updated the MEA flu vaccine leaflet to cover the vaccine that is being used this year

This leaflet is currently free to download from the MEA website:

http://www.meassociation.org.uk/201...about-the-201718-flu-vaccine-04-october-2017/

Feedback on the use of flu vaccine is welcome - this will help us to keep the 'patient evidence' up to date

Dr Charles Shepherd
Hon Medical Adviser, MEA

MEA website online shop:
http://www.meassociation.org.uk/shop/

Complete MEA literature order form (August 2017):
http://www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-Autumn-2017.pdf
 
Last edited:

Skycloud

Senior Member
Messages
508
Location
UK
Nope. Won't get one. I had the pneumonia vaccine in the fall of 2013 and...got pneumonia. It depends on your immune system, but I am against them unless absolutely necessary. Measles and the like.

I developed something very like measles (it may have been) recently that I am still coping with the effects of. I left the house twice during the period in which I could have caught it - to go to the GP surgery and a hospital appointment. I'm not keen to go back for a flu jab!
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
Also many thanks from my side, this is a great resource.

That 27% or about 1 in 4 CFS patients say the flu vaccine made them 'much worse' in the online poll is worrying.

But an interesting question that no one seems to have studied is how non-vaccinated CFS patients who actually did catch the flu compare to those who took the vaccine.

Given that severe infections are very likely to make many patients much worse, it may be worth taking the risk of getting vaccinated and being among the 27%, but then having a good chance of avoiding actual infection and (probably even worse) adverse effects.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
We have just updated the MEA flu vaccine leaflet to cover the vaccine that is being used this year

This leaflet is currently free to download from the MEA website:

http://www.meassociation.org.uk/201...about-the-201718-flu-vaccine-04-october-2017/

Feedback on the use of flu vaccine is welcome - this will help us to keep the 'patient evidence' up to date

Dr Charles Shepherd
Hon Medical Adviser, MEA

That's a thorough report Charles, noting the potential downsides as well as the benefits. Great stuff from the MEA, thank you. My family will be getting it. I won't simply because I'm largely immune to cold and flu since getting ME, but if I wasn't I'd probably have it.
 

Ysabelle-S

Highly Vexatious
Messages
524
My previous GP refused to give me the flu vaccine many years ago because she said it could make ME sufferers worse. Consequently, I've never had it and would be concerned about any negative impact on my health if I did get it done.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
@Ysabelle-S But if you are actually getting the flu, there would probably also be a negative impact, so if there is a good chance that can be avoided by getting vaccinated, it might still be worth it even if the vaccine also has a risk of negative impact.

I'm not suggesting that you (or anyone) take or not take the vaccine, just saying there are two sides of the coin.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
I was offered one about a decade, or maybe longer, ago. It made me worse, not "much" worse, not bedbound or anything but worse. I was reasonably comfortable at the time, moderate physical limits, significant cognitive impairment but not a lot of pain and my envelope allowed me to live reasonably comfortably, couldn't work, couldn't socialise etc. but apart from that I was okay.

After the flu jab pain levels went up considerably, flu like symptoms went up a lot, it wasn't possible to be comfortable, cognition went down, sensitivity to noise/light went up massively, it was unpleasant. Lasted months.

At the time (before the jab) if I caught a bug that was doing the rounds, flooring people, I would have it for a morning, get pre-immune activation symptoms, be mildly uncomfortable for a few hours (with a bit of dizziness, nausea, muscle pain etc.), and then it would pass.

Flu jabs - bad.

Never again.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Near the start of winter here in australia the tv news stated we had one of the highest rates of flu vaccines this year. A few months later they were saying we had the highest rates of influenza in along time and severe as even young health adults were being hospitalised for influenza and it wasnt just the elderly and the very young getting sick.

What happened to this herd immunity they keep talking about.

A couple years back griffith university in australia, the guys who do the nk function studies on cfsme people, they did a study on cfsers and the flu vaccine and the conclusions were it wasnt effective. I cant recall why, eg if it was because of our faulty immune system or not?
 

charles shepherd

Senior Member
Messages
2,239
I will never have a flu shot again, as I became disabled shortly after receiving my first and last one. It was mandatory since I worked in healthcare, alas.

Did you see the two case reports in the BMJ that I refer to in my review:

Adverse reactions

The only published research study into adverse reactions to flu vaccine in people with ME/CFS concluded that people with ME/CFS were no more likely to have a serious adverse reaction than people receiving this vaccine for recommended reasons.

However, two case reports involving health workers who developed ME/CFS after swine flu vaccination have been reported in the British Medical Journal. Both developed moderate to severe symptoms and were unable to return to work.

  • Reference: Should influenza vaccination be mandatory for healthcare workers? BMJ, 2013; 347:f6705.
 

charles shepherd

Senior Member
Messages
2,239
@Ysabelle-S But if you are actually getting the flu, there would probably also be a negative impact, so if there is a good chance that can be avoided by getting vaccinated, it might still be worth it even if the vaccine also has a risk of negative impact.

I'm not suggesting that you (or anyone) take or not take the vaccine, just saying there are two sides of the coin.

Exactly!

There isn't a simple yes/no answer to having a flu vaccine if you have ME/CFS and my usual advice to patients is to weigh up all the information and evidence - both anecdotal and published - and come to a decision based on individual circumstances

On a personal basis I don't usually have a flu vaccine but may decide to do so this year - as it looks as though there may be a nasty dose of flu on the way…..

CS
 

Old Bones

Senior Member
Messages
808
I was seeing a hematologist/internal medicine specialist during last fall's prime "flu shot season". When asked if I'd had my flu shot yet, I answered that I'd heard ME specialists were pretty much evenly divided in opinion regarding flu shots for this patient group -- half "yes", the other half "no". I explained that since I'd only had the flu once in the almost 30 years since my viral onset, I had decided against having the shot. Her immediate response: "I think that's a very wise decision."

My husband did have last season's vaccine -- in part to protect me since he's in contact with a lot of people. He became ill immediately afterwards including his first taste of many of the neurological symptoms I've experienced for decades. We've often considered that the flu shot triggered "ME lite" in him, because although he's mostly recovered, he still has some mild residual symptoms he didn't have before the shot. Needless to say, there will be no flu shot for hubby this year.

In general, I understand the concept of vaccination and can see the potential merits. However, I wonder about the safety of some of the adjuvents used. How can one be sure that foreign substances added to vaccines to increase the body's immune response, and that the body may not be able to clear, are safe for everyone?
 

charles shepherd

Senior Member
Messages
2,239
Near the start of winter here in australia the tv news stated we had one of the highest rates of flu vaccines this year. A few months later they were saying we had the highest rates of influenza in along time and severe as even young health adults were being hospitalised for influenza and it wasnt just the elderly and the very young getting sick.

What happened to this herd immunity they keep talking about.

A couple years back griffith university in australia, the guys who do the nk function studies on cfsme people, they did a study on cfsers and the flu vaccine and the conclusions were it wasnt effective. I cant recall why, eg if it was because of our faulty immune system or not?

I think you are referring to the Breu et al research that I quote in the review - as below

If so, I don't think they concluded that flu vaccine was not effective in ME/CFS (but I would need to go back to the paper)

CS

Research into flu vaccines and ME/CFS

The effect of influenza vaccination on ME/CFS was examined in an Australian pilot study which found that vaccination is accompanied by a degree of immune system dysregulation in ME/CFS patients compared to controls and that the vaccine has the ability to increase cytotoxic activity and pro-inflammatory reactions post vaccination (Brenu et al 2012). However, Prinsen et al (2012) found that humoral and cellular immune responses following influenza vaccination were comparable in ME/CFS patients and healthy controls.

Reference: Brenu EW et al. The effects of influenza vaccination on immune function in patients with chronic fatigue syndrome/myalgic encephalomyelitis. International Journal of Clinical Medicine, 2012, 3, 544 – 551.

Reference: Prinsen H et al. Humoral and cellular immune responses after influenza vaccination in patients with chronic fatigue syndrome. BMC Immunology, 2012, 13, 71.
 

Dolphin

Senior Member
Messages
17,567
However, two case reports involving health workers who developed ME/CFS after swine flu vaccination have been reported in the British Medical Journal. Both developed moderate to severe symptoms and were unable to return to work.


Re: Should influenza vaccination be mandatory for healthcare workers?
We report two cases of Chronic Fatigue Syndrome (CFS) after Swine Flu vaccination.

CLINICAL BACKGROUND
CASE ONE
Mrs A was a 52 year old married lady of Caucasian background, working in a profession allied to medicine in a Devon hospital. At the time of vaccination she had no known health problems. Routine vaccination for swine flu was recommended by Occupational Health in January 2010.

Stiffness and pain developed in all her joints 2 days after immunisation and she needed time off work. Her current symptoms then developed over the following two weeks. She noticed impaired concentration and pronounced fatigue. Fatigue was brought on by minor degrees of activity, was not fully relieved by rest and had associated post-exercise myalgia. She described her muscles feeling weak, leaden and aching. Other principal symptoms were that she had a struggle to get her breath and at times lost her voice. She also described difficulty in gripping things. She was housebound for two months after the onset.

There was a minor car accident a few months before the onset of these symptoms without any major physical or psychological injury. At the onset of her symptoms she was on Hormone Replacement Therapy, (as she was menopausal) which was stable and without adverse effects. She had been referred for ENT investigation of dysphonia eight years before, thought to be post-viral. No fatigue syndrome was documented then. ENT investigations and blood tests (including thyroid function) were normal and after speech therapy she made a full recovery.

Past medical and surgical history was otherwise negative as was psychiatric, drug and alcohol and forensic history. She did not smoke or use alcohol. Positive aspects of the family history were that her mother had depression when she was younger and Mrs A’s older sister has a history of chronic fatigue syndrome.

She was investigated in respiratory medicine and ENT, but no serious pathology of the ENT, cardiovascular or respiratory systems was found and no preceding viral illness was implicated. Dysphonia was again diagnosed and possible dysfunctional breathing (but with normal saturation). She had speech therapy and physiotherapy. A phased return to work was arranged (on reduced hours), but she could not maintain this and was signed off sick by her general practitioner. 15 months after the onset of her complaints she was referred by her general practitioner to the local CFS/ME service. At this time fatigue was her principal complaint and respiratory and vocal symptoms were less prominent.

Investigations as per NICE guidelines for CFS (1) were performed by her general practitioner before referral and were unremarkable. She was assessed and discussed by the multidisciplinary CFS/ME team and her notes thoroughly reviewed before a diagnosis of chronic fatigue syndrome was made conforming to criteria as per NICE guidelines (1). No current or lifetime psychiatric diagnoses were detected and her fatigue was of definite onset, severe, persistent and medically unexplained.

Both individual and group treatment was offered by occupational therapists in the CFS/ME service (based on current NICE guidelines). Despite the intervention, her severe fatigue has persisted and she has not been able to return to work.

CASE TWO
Mrs B is a 46 year old married lady of Caucasian background. She was employed as a specialist nurse within a Devon Hospital and had no preceding health problems before this episode. She had a flu-like illness at the time of the Swine flu pandemic in Winter of 2009, with shortness of breath, low energy and chest infection (treated with antibiotics). Her symptoms lasted six to eight weeks with this illness, but she made an unremarkable recovery. She had no physical complaints before she was given the combined swine flu and influenza vaccination at work in October 2012. The routine vaccination for swine flu was recommended by the Occupational Health Department.

2-3 days after the vaccination she became extremely lethargic with low energy, not relieved by resting and pains in her leg muscles and areas of tenderness over her knees and thighs. She also described clear post-exercise myalgia. She had sharp occipital headaches (not relieved by painkillers) and ringing in her ears, which was worse under stress. She also described pins and needles and twitching in her arms and legs and hands (like a vibration). These symptoms were worse on the left side of her body. In addition, she described difficulties with short term memory and concentration and difficulties with word-finding (using the wrong word or forgetting common words).

She was investigated in primary care and in view of a family history of multiple sclerosis was seen by a local neurologist and also had a second opinion from a Professor of Neurology at a local University hospital.

Stiffness and pain developed in all her joints 2 days after immunisation and she needed time off work. Her current symptoms then developed over the following two weeks. She noticed impaired concentration and pronounced fatigue. Fatigue was brought on by minor degrees of activity, was not fully relieved by rest and had associated post-exercise myalgia. She described her muscles feeling weak, leaden and aching. Other principal symptoms were that she had a struggle to get her breath and at times lost her voice. She also described difficulty in gripping things. She was housebound for two months after the onset.

Past medical and surgical history was a history of a right sided wrist injury many years before and a regional pain syndrome managed by an orthopaedic surgeon and Pain management service with reasonable recover. Otherwise history was negative as was drug and alcohol and forensic history. She did not smoke and her use alcohol was sparing and well under safe recommended limits. Positive aspects of the family history were that her non-identical sister who is two years younger has been diagnosed with MS. Her mother had renal disease during pregnancy which has persisted since then. Her maternal grandfather had the onset of Parkinson’s disease in his fifties.

Psychiatric history was of a period of mild reactive depression/adjustment disorder after divorce 6 years before the present illness, for which she received brief counselling. There was no other history of note, history of self-harm, or other psychiatric contact. She had a difficult bereavement when her infant son died in hospital 15 years earlier.

She was on no prescribed medication at the time of assessment. She had bought multivitamins, magnesium and evening primrose oil. She has been mostly housebound since this episode and cannot usually get out of the house without aid. She had severe difficulties in a range of physical activities, needing to use a stick or wheelchair for mobility and needing help from her husband with daily household tasks and at times showering and dressing. She had difficulties also in a range of cognitive tasks, such as reading, conversation, taking in new information, remembering appointments. Mental state examination revealed some anxiety and irritability and edginess and one panic attach (2-3 days before the assessment). Her mood was normal and reactive with no negative thought content or thoughts of self-harm. Her sleep has been unrefreshing and disturbed and her appetite decreased (but no weight change). There were no other somatic complaints.

Investigations as per NICE guidelines for CFS (1) were performed by her general practitioner before referral and were unremarkable. She was assessed and discussed by the multidisciplinary CFS/ME team and her notes thoroughly reviewed before a diagnosis of chronic fatigue syndrome was made conforming to criteria as per NICE guidelines (1). No current or lifetime psychiatric diagnoses were detected and her fatigue was of definite onset, severe, persistent and medically unexplained.

Both individual and group treatment was offered by occupational therapists in the CFS/ME service (based on current NICE guidelines). Despite the intervention, her severe fatigue has persisted and she has not been able to return to work.

DISCUSSION
During the previous pandemic of Swine Flu, possible complications of vaccination were reported (e.g. Guillain-Barre Syndrome, multiple sclerosis), but remain controversial (2,3). The recent vaccination programme for Swine Flu was introduced rapidly to deal with the serious public health threat of the pandemic and the UK Government rolled out this programme first for at risk groups and also for health staff.

Potential risks of immunisation causing aberrant immune responses have been suggested in some cases of chronic fatigue syndrome, but causality remains unclear (4). Chronic fatigue syndrome has also been reported in confirmed sufferers of swine flu (5), but we are not aware of any published case reports of chronic fatigue syndrome with onset after Swine Flu vaccination. Factors associated with the onset of chronic fatigue syndrome are difficult to assess, but there did not appear to be any other obvious triggers in Mrs. A’s case.

A definite causal relationship between vaccination and chronic fatigue syndrome is not claimed here, all that has been established is a possible temporal relationship. By its definition, Chronic Fatigue Syndrome, needs to be present for at least four months or six months (depending on the case definition), which highlights the case for longer post-vaccination surveillance if this possible adverse outcome is to be considered.

CONFLICTS OF INTEREST
We are not aware of any competing commercial, clinical or academic conflicts of interests.
Written permission has been given for us to report the case by the patient concerned. To protect their confidentiality certain details have not been mentioned in this report.

Sean Lynch MBChB FRCPsych PhD MBA DIC *
Consultant Psychiatrist, Wonford House Hospital, Exeter and Honorary Associate Professor, Peninsula College of Medicine and Dentistry
Corresponding author, assessed patient and prepared body of case report

Dr. Mike Jefferys BSc MBBCh FRCP
Consultant Physician, Royal Devon and Exeter Hospital NHS Foundation Trust
Reviewed medical notes to confirm diagnosis and contributed to development of case report

Dawn Cutts SROT MBAOT
Head Occupational Therapist, CFS/ME Service (North and East Devon), Arlington Centre, Exeter Community Hospital, Whipton, Exeter, Devon
Involvement with patient treatment and contributed to case report

Jessica Guy BSc(Hon) Occ. Therapy
Specialist Senior Occupational Therapist, CFS/ME Service (North and East Devon), Arlington Centre, , Exeter Community Hospital, Whipton, Exeter, Devon
Involvement with patient treatment and contributed to case report

Abby Burton BSc (Hon) Occ. Therapy
Senior Occupational Therapist, CFS/ME Service (North and East Devon), Arlington Centre, , Exeter Community Hospital, Whipton, Exeter, Devon
Involvement with patient treatment and contributed to case report

Acknowledgement: We are grateful for the administrative support and help in preparing the report from Julie Lawry, service administrator.

REFERENCES
1. Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy): diagnosis and management in adults and children Clinical guidelines, CG53 - Issued: August 2007 NICE

2. KE Nelson . Invited commentary: influenza vaccine and Guillain-Barre syndrome--is there a risk? Am J Epidemiol. 2012 Jun 1;175(11):1129-32.

3. LT Kurland , CA Molgaard , EM Kurland , WC Wiederholt , JW Kirkpatrick . Swine flu vaccine and multiple sclerosis JAMA. 1984 May 25;251(20):2672-5.

4. OD Ortega-Hernandez , Y Shoenfeld . Infection, vaccination, and autoantibodies in chronic fatigue syndrome, cause or coincidence? Ann N Y Acad Sci. 2009 Sep;1173:600-9.

5. R Vallings. A case of chronic fatigue syndrome triggered by influenza H1N1 (swine influenza). J Clin Pathol. 2010 Feb;63(2):184-5.

The BMJ has obtained patient consent

Competing interests: No competing interests
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
"Chronic fatigue syndrome has also been reported in confirmed sufferers of swine flu (5)"

That's the problem, you can get it from getting vaccinated but also from not getting vaccinated and then getting sick.

It's the same with Guillain-Barre Syndrome. The flu vaccine is known (or strongly suspected) to - very rarely - trigger the disease, but getting the flu is also known (or strongly suspected) to trigger it.

With respect to Guillain-Barre Synrdome, there are some reliable numbers:

The likelihood for getting GBS after influenza infection is estimated to be 1:10,000
The likelihood for getting GBS after influenza vaccination is estimated to be between 1:100,000 and 1:1,000,000

https://en.wikipedia.org/wiki/Influenza_vaccine#Safety

So assuming the numbers are reliable, if you're concerned about GBS: you are 10 to 100 times likelier to get GBS if you don't use the vaccine and get influenza infection as opposed to getting the vaccine and not getting influenza infection (*)

The problem with CFS is: We don't have reliable numbers. In how many cases is CFS triggered in healthy people by the flu vs the flu vaccine? Case reports don't give an answer.

And the question is the same regarding negative effects for those who already have CFS. Making it even worse, it probably differs depending on what subgroup of CFS you have (viral-trigger, Lyme, autoimmunity-driven etc.).

So it's really hard to know what to do. A 3rd option would be not using the vaccine, but using antivirals (e.g. Tamiflu) immediately when any symptoms appear. That's perhaps what I am going to try this year.

(*) of course, you can use the vaccine and still get sick or not use the vaccine and be lucky and not get sick, but let's leave that aside for simplicity. (it would make the vaccine a bit less attractive, but it is still a much lower risk of GBS overall)