NHS says flu dangerous to PWME

[Sasha]

I suspect that people are being too optimistic about this - it's known that some mental health problems depress the immune system - so in theory anyone deemed to have such a condition is more at risk from N1H1 - so the NHS's new advice doesnt neccessarily indicate any change of position - after all they have millions of spare dozes of this vaccine which were panic ordered..

Hi Wonko - actually we're in luck this time because it's clear from the wording on the NHS site that they're calling CFS a chronic neurological disease. Here's the text:

It is already known that you are particularly at risk if you have:

* chronic (long-term) lung disease
* chronic heart disease
* chronic kidney disease
* chronic liver disease
* chronic neurological disease (neurological disorders include chronic fatigue syndrome, multiple sclerosis and Parkinson's disease)
* immunosuppression (whether caused by disease or treatment)
* diabetes mellitus​

 

[free at last]

I agree Sasha since when is depression considered a neurological disease right amongst MS and parkinsons ? if what wonko was saying was correct ( its all about depression ) then other depressive mental health conditions would have to be included which they are not. so personally i think this is a huge statement Also the bit about lots of swine flu vaccine left over i dont think is relevent in the slightest. this is a seasonal vacciine that was created fresh, with two other strains that might be circulating this year. Pandemrix was a completely different stand alone vaccine that had to be mixed with the adjuvant before use. Does wonko think there all sitting there mixing pandemrix with the seasonal shot at gp surgerys or something ? the strain itself might well be the one that is being used in the new seasonal vaccine. but thats no different to any strain that goes in seasonal shots. and unless im mistaken ( its possible i am ) i dont think any adjuvant is being used in this seasonal shot. So if that is correct to compare the swine flu shot with this years seasonal one is like comparing chalk with cheese. If anyone can show that this vaccine has adjuvent in it, then i stand corrected. but i didnt think any seasonal vaccine had that in it. which is why pandemrix had to be mixed at the GP surgery. while seasonal ones do not. completely different vaccine if im not mistaken. maybe i should ask My GP ?

 

[Wonko]

seems there is a conflict on the NHS swine flu pages - as the front page doesnt mention CFS - only the symptoms page does - but I suppose thats an improvement - tho that 1 page relatign to H1N1 only is the only thing I can find on either the NHS or directgov that mentions ME/CFS in this context - it's certainly not mentioned in a list for routine seasonal flu shots - so sorry Free At Last but most of your above post simply isnt relevant AFAIK.

It's a cynical CYA move designed not to attract attention but so they can point to it in the event that a retrovirus is proved (even to the NHS's satisfaction) to be involved in ME - it's not going to cost them anything and IMO doesnt indicate any change in their postion - other than that someone somewhere in the NHS has decided there is a remote chance they may need to cover themselves

sorry - maybe I'm unduely pessimistic where the NHS is concerned (if thast possible) but thats the way i see it

 

[Sasha]

seems there is a conflict on the NHS swine flu pages - as the front page doesnt mention CFS - only the symptoms page does - but I suppose thats an improvement - tho that 1 page relatign to H1N1 only is the only thing I can find on either the NHS or directgov that mentions ME/CFS in this context - it's certainly not mentioned in a list for routine seasonal flu shots - so sorry Free At Last but most of your above post simply isnt relevant AFAIK.

It's a cynical CYA move designed not to attract attention but so they can point to it in the event that a retrovirus is proved (even to the NHS's satisfaction) to be involved in ME - it's not going to cost them anything and IMO doesnt indicate any change in their postion - other than that someone somewhere in the NHS has decided there is a remote chance they may need to cover themselves

sorry - maybe I'm unduely pessimistic where the NHS is concerned (if thast possible) but thats the way i see it

Hi Wonko - I understand your cynicism (I think we've all got a bit that way in the UK!) but if this was CYA they'd be doing it for both seasonal flu and H1N1. Also, there was no need for them to state that CFS is a neurological condition; they could have just listed it without categorising it.

At the moment, XMRV is not proven as causing CFS although clearly it's a candidate; everyone is waiting on more data. In that situation the NHS couldn't be criticised for not taking XMRV into account as far as flu jabs go. There's no need for CYA from their point of view in relation to flu jabs.

I think this is actually the good news it appears to be!

 

[free at last]

Lol for years the NHS has tried to ignore and bellittle the illness, i already stated way back that this is to cover them selves. thats obviouse, But saying everything ive said is irrelevent is short sighted i think, just because there not advertising this new ADMMISSION everywhere, doesnt mean its not a milestone admission. Of course there not going to make a fan fare out of this, notice how there was no statement about this, they just quitely slipped it in like no one would notice.

First you said this can be explained as depession. well thats clearly wrong. ( and the flu comments i think ) so then you go looking for other admissions by them elsewhere, and see the lack of it as evidence that this still means nothing, even though the depression idea doesnt really work. Well im afraid we will have to agree to disaagree on this, Just because there trying to be low key about this, and cover there backs, does not mean including us with the at risk neurological disease high risk groups is meaningless, far from it. because we know the reasons they quietly slipped this in, not broadcasting it everywhere. especially makes it understandable why indeed this is relevent beyond beief, and i think all of your statements so far have been plain wrong and dare i say it irrelevant. can you imagine a conversation with a GP now this has happened, and he wants to send a patient to a psychiatrist, and the patient says no, i want to see a neurologist. and the GP says no sorry the illness is considered purely somatic by the NHS, and you NOW but couldnt before ( irrelevent ? ) can point out, ahh but your wrong. the NHS has us listed in the high risk group of neurological disease that needs protecting from influenza ( even if one has to look for that INCLUSION ) A little more than they would prefer. The GP Now now has to either publicly state he dissagrees with the NHS classification of the illness. in which case refuse the flu jab. ( possibly risking a inquiry ) As hes opinion is clearly not agreeing with the NHSs assesment of the condition. or put hes personal opinions aside, and fall into line with this NEW addition to the at risk group. and reluctantly send the patient to a neurologist. Not a psychiatrist. If you cant see the huge ( and many ) implications this addition to the neurological at risk group will likely bring for all of us. then im just flabbergasted. Im such a sceptic ( as nearly everyone probably knows about me here ) about anything the NHS does and says about this illness. that i dont say all this lightly, i firmly believe we are seeing a very slow ( and quite ) u turn here, that is anything but irrelevant. Well thats my opinion. if you dont agree fair enough, each to there own. personally it seems so obviouse to me. I just cant see how your not getting the ramifications of what they have said. rather concentrating on where they are saying it ? now that seems completely irrelevant to me

 

[Wonko]

I'm not sure where your getting your information from but my posts in this thread arent included in your sources

1. I didnt say that ME/CFS was depression - I said that some mental health conditions (givign dpression as an example) can negatively impact on the immune system - so the fact that they have now decided ME/CFS is worthy to be on the at rsk list for H1N1 doesnt mean they have changed their minds on ME/CFS being primairly a psyche condition - the inclusion of MS and parkinsons in the same section doesnt reassure me at all and I'm surprised it does anyone else given the NHS's prior treatment of these condtions

2. I didnt say everything you posted was irrelevant - I said most of it (in that post) was because most of it was about the seasonal flu jab (as was your last post) and we are NOT on the at risk list for that - the change in status ONLY (according to google anyway) applies to H1N1 which is officially a defunct pandemic - hence it's not going to cost them money

3. if they were serious about effectively reclassifing ME/CFS away from psyche's then they would update more than an at risk list for a defunct (over) pandemic - the absolute minimium would be other vaccinations which are given to other at risk groups - they havent ergo they havent changed their postion

but I'm not particularly compis mentis atm so I may be misinsterpretign what everyone has written, making logical/emotional errors or simply not communicating what i think I am - - so I'm going to have to agree with your postion of agreeing to differ

 

[VillageLife]

Last year I asked my GP if I was on the priority list for the swine flu jab (I had been for the seasonal flu jab). He said that I wasn't and that it wasn't up to him but that there was a list of conditions that people had to have to be eligible

went to my GP last year also asked for Swine Flu jab, he said sorry ME/CFS not on the list....he said have you got anything else....I said no just ME/CFS...

 

[free at last]

Well i assumed that list would be updated, so now you got me thinking will it be ? . seems rather odd i agree Wonko, because any A infuenza can be dangerouse to at risk groups, so they are on shakey ground on that one. if they dont intend to update the list. i think we should be asking why, the pandemic might not be over though, as cases in australia have been fairly widespread this, year. but of course we dont know yet, if thats going to happen here. if you was speaking just about pandemrix, then i aplogize, as i thought you was suggesting seasonal jabs were just as unsafe ( many are making those claims ) which is probably why i thought you was suggesting that. I still dont buy the depression bit though. becaise clearly if that was the case. then i feel other depressive disorders ( that could also effect the immune system would also be on that list like BI polar manic depression ect. But i understand why your pessemistic. really i do, i know what they having been doing all these years too
i think we need to clarify if we are to be included for the seasonal jabs

 

[Wonko]

according to the nhs swine flu page the who says the pandemic is over - I havent checked to see if the who actually said this myself but given typical nhs doublespeak this doesnt actually mean no one is gettign swine flu anymore - it probably means that the numbers, frequency and distribution of cases no longer meets the definition of pandemic according to them

afaik at no point have I made comment in this thread about the safety/desirability/effecacy or otherwise of any vaccine at all - the only thing I commented re vaccines was availability of the N1H1 vaccine

 

[Cloud]

In the US I think the combo shot is for H1N1 and the Seasonal Flu shot. FYI

Which I did not get for free at work, and will not be getting. My last Tetanus shot was in 1997, don't want to get that either!

Last year I saw 1 of my CFS Drs and asked him what he thought of the H1N1 and flu shot, his wife was pregnant, and he has 3 children, he told me that none of them get the shots. He said make up your mind with that info. So I think he was telling me not to get the shot. Although, I wonder, I think my immune system has shifted. I used to get night sweats quit a bit, not anymore, also don't feel as fluish as in the past, 1st 7 years. Perhaps it is due to being on LDN for over 1 year now and 5,000 IUs of Vitamind D for a year, and 8,000 IUs in the winter.

GG

Lol, good one with your doc....Make up your mind with that info. You may be right about the LDN....that stuff has a profound affect on what ails us.

Yep, your right, the Tetanis is not in with the h1n1.....it's combined with the whooping cough vaccine. So the h1n1 is a 2fer with the seasonal flu vaccine....joy joy.