Severe ME sufferer faces ban on volunteering

[Pike]

I am 49 and have struggled since 2011 to stay in my teaching job due to a bout of swine flu led to me developing ME. A major relapse in May 2016 led to me taking long term sick leave and after 8 months (January 2017) was dismissed on the grounds of ill-health as I was too ill to return to work. In August this year I was awarded enhanced ill-health benefits by the Teacher Pension Scheme.
The offer of enhanced ill-benefits (meaning I was too ill to perform any kind of paid employment upto my pension age of 60) contained the proviso:

"You should inform us immediately in writing before any type of employment is undertaken, whether paid or voluntary, as we will need to review your continued entitlement to ill-health benefits from the Teacher Pension Scheme."

I rang up Teacher Pensions about the issue of voluntary 'work' and was told that I can attend meetings of my local ME Support Group but not allowed to take part in organising any activities. Even an activity such as helping out with a cake stall to raise funds would need their permission as it would be considered a 'borderline' issue.

In effect, I feel discriminated against as I cannot do any kind of volunteering as it would jeopardise my pension. I have spoken to various medical professionals and, friends and my ME Support Group and they all feel appalled at this restriction upon my personal freedom. As one friend said ,"Are you expected to sit and watch tv for the rest of your life?"

I would like to do more to help my local ME support group but am unable to do so due to the restriction put on me by the Teacher Pensions Scheme.

I contacted the Equality Advisory Service and the Pension Advisory Service and their advice amounted to suggesting I write a letter of complaint to Teacher Pensions. I have not made a complaint to them about this issue as I am afraid it might lead to them deciding to review my pension award and the loss of my main source of income.

My local ME Support Group's view is expressed in the following motion. It sums up better than I can how I feel about this issue:

''KCIMESG is appalled that people who have ME are forced to stop volunteering if they retire early from their jobs due to ill health, and threatened with unbearable economic consequences if they choose to continue volunteering. There is a significant difference between working full-time and overtime, and volunteering a few hours a month for a small local organisation. Volunteering adds purpose and value to the lives both of volunteers, and the people and organisations who benefit from the work of volunteers.

KCIMESG urges employers and pension funds to:
recognise the difference between full-time work and volunteering for a few hours a month,
Recognise the impact of volunteering on the lives of volunteers and the people and organisations who are helped by their volunteering,
Allow people who take early retirement due to ill health to volunteer, and
Guarantee that people who volunteer after taking early retirement will not be punished or threatened with punishment.''

Can I do anything about this restriction upon my volunteering issued by the Teacher Pension Scheme?

Thank you for your time in this matter.

 

[Hip]

a bout of swine flu led to me developing ME.

I know this does not address your question, but was your swine flu H1N1 infection diagnosed with a blood test showing the presence of this virus?

Yours is the first forum account I have seen of the H1N1 virus triggering ME/CFS (although a study showed that those infected with H1N1 during the 2009 pandemic have twice the rate of ME/CFS, so it seems this swine flu virus is linked to ME/CFS).

Did your ME/CFS appear soon after the swine flu infection, or did it take months or years to manifest?

 

[Not dead yet!]

Wow, this sounds more and more like a "silencing" tactic. It has a whitewash of seeming reasonable by limiting what you're expected to be doing. But we're not talking about playing 10 rounds of tennis in a day. Sitting and selling cakes is "borderline"? That's just silly. They need to specify clearly what is or is not expected of you, in a binary way. And if they get stroppy, you can offer to have them pay you to sell cakes on a full time schedule instead of a pension. Woops, you couldn't do that... because it's too much alertness. I'm also sure that's not the work they need you to do. Hmm.... they should think that through, eh?

If this was the USA (you talk like you're in the UK, sorry if I assumed that and it's wrong), I'd say hire a "Care Manager" for just a couple of weeks to handle this issue and thresh it out. Although they usually work with the elderly, they know the health care system very well. I don't know if that exists in the UK or not.

 

[Pike]

I know this does not address your question, but was your swine flu H1N1 infection diagnosed with a blood test showing the presence of this virus?

Yours is the first forum account I have seen of the H1N1 virus triggering ME/CFS (although a study showed that those infected with H1N1 during the 2009 pandemic have twice the rate of ME/CFS, so it seems this swine flu virus is linked to ME/CFS).

Did your ME/CFS appear soon after the swine flu infection, or did it take months or years to manifest?

 

[Pike]

I was diagnosed with swine flu by my GP based upon my symptoms. I went back to work after a month and became increasingly ill/unable to cope with a heavy workload. About 6 months later I crashed and was diagnosed with ME.

 

[Pike]

Wow, this sounds more and more like a "silencing" tactic. It has a whitewash of seeming reasonable by limiting what you're expected to be doing. But we're not talking about playing 10 rounds of tennis in a day. Sitting and selling cakes is "borderline"? That's just silly. They need to specify clearly what is or is not expected of you, in a binary way. And if they get stroppy, you can offer to have them pay you to sell cakes on a full time schedule instead of a pension. Woops, you couldn't do that... because it's too much alertness. I'm also sure that's not the work they need you to do. Hmm.... they should think that through, eh?

If this was the USA (you talk like you're in the UK, sorry if I assumed that and it's wrong), I'd say hire a "Care Manager" for just a couple of weeks to handle this issue and thresh it out. Although they usually work with the elderly, they know the health care system very well. I don't know if that exists in the UK or not.

 

[Pike]

Thank you for your kind words. I live in the UK and at the moment am seeking help from the Disability Law Service.

 

[Hip]

I was diagnosed with swine flu by my GP based upon my symptoms.

It could be swine flu, but enterovirus can also cause flu-like symptoms when you first catch it, so you might equally have caught enterovirus. Enterovirus is considered a common ME/CFS triggering virus. The reason this is important is that enterovirus-associated ME/CFS has treatment which is often effective, namely oxymatrine.

 

[IrisRV]

I know this does not address your question, but was your swine flu H1N1 infection diagnosed with a blood test showing the presence of this virus?

Yours is the first forum account I have seen of the H1N1 virus triggering ME/CFS (although a study showed that those infected with H1N1 during the 2009 pandemic have twice the rate of ME/CFS, so it seems this swine flu virus is linked to ME/CFS).

Did your ME/CFS appear soon after the swine flu infection, or did it take months or years to manifest?

FWIW, I had ME/CFS before I got H1N1, but it gave me a severe relapse taking me to bedbound for months with a painfully slow recovery through chairbound and housebound over years. I've never fully recovered.

I don't remember if we were diagnosed with a blood test, but I have a hard time believing our sceptical GP would have diagnosed both daughter and I with H1N1 with pneumonia, knowing we're pwME, if he hadn't done the test.

 

[Hip]

I don't remember if we were diagnosed with a blood test, but I have a hard time believing our sceptical GP would have diagnosed both daughter and I with H1N1 with pneumonia, knowing we're pwME, if he hadn't done the test.

Medical diagnosis is often guesswork, and misdiagnosis is common. For example, this article says 1 in 6 NHS patients are misdiagnosed. If you had flu-like symptoms during the swine flu epidemic, it's possible that your doctor would just assume you were another case of H1N1 (which you may well have been); but it's not impossible that some other virus like enterovirus was causing your flu-like symptoms.

This Medscape article says:

Accurately diagnosing influenza A or B infection solely on the basis of clinical criteria is difficult because of the overlapping symptoms caused by the various viruses associated with upper respiratory tract infection (URI). Viruses that may initially cause influenzalike symptoms include adenoviruses, enteroviruses, and paramyxoviruses

H1N1 is an influenza A virus.

 

[IrisRV]

Medical diagnosis is often guesswork, and misdiagnosis is common. For example, this article says 1 in 6 NHS patients are misdiagnosed.

I agree, we may have been diagnosed by guesswork. The point that I was trying to make is that our GP was such an ME skeptic that I doubt he would have given us a diagnosis like that without testing for fear of encouraging our false illness beliefs. But who know? It's too long ago for me to know or care anymore.

 

[Hip]

I just mention it, @IrisRV, because if your ME/CFS were triggered and caused by enterovirus rather than influenzavirus, there is a treatment for enterovirus worth considering: oxymatrine.

 

[IrisRV]

I just mention it, @IrisRV, because if your ME/CFS were triggered and caused by enterovirus rather than influenzavirus, there is a treatment for enterovirus worth considering: oxymatrine.

We don't know what triggered our ME. We definitely had the sudden onset (within hours) viral illness that's often mentioned, so it's quite possible it was an enterovirus.

That said, we found oxymatrine in the form of Dr Chia's supplement, Equilibrant, very helpful overall. In particular, it cleared up a persistent coxsackii b (an enterovirus) I had. Good stuff, oxymnatrine.

I fear @Hip, we've taken this thread off topic. If you're interested in discussing oxymatrine further, let's start a new thread.

 

[Hip]

I fear @Hip, we've taken this thread off topic.

Sorry, yes you're right.

 

[Joyce Heward]

My new boss used my emphysema to get rid of me. We think she felt threatened by me. I had to fight to get ill-health retirement so at least I could access a small local authority pension, as my state pension age moved from 60 to 66.

We obviously share the same pension ‘rules and regulations’, and I remember reading through them at the time and being surprised at the mention of volunteering, even for a couple of hours a week, needing permission from the pension authority.
Good luck.