Discussion in 'General ME/CFS News' started by Kate_UK, Nov 25, 2010.
It is hard to know just how many ME patients and those with related conditions (MCS) have been abandoned in this way.
Another severely ill lady in the UK is unable to tolerate the chemicals that come from modern living in normal house and has been surviving in a shed in the middle of a field on an organic farm in Somerset.
ME patients have been sending her hand warmers and chemical free cotton blankets, so that she doesn't die in the winter. She sleeps in a chair (she is unable to lie down on a bed) in umpteen levels of clothes which a very elderly relative who lives some distance away is struggling to keep washed and dry (they have to be washed in filtered water with no chemical powders). Her floor is flooded with water when it rains.
Her GP has forbidden the local nurse to visit to do her dressings (she has sores all over and the nurse was shocked when she arrived and saw the state of them). Her 'ring fenced' medical treatment (IV drips - vitamins I think), has been stopped and the large sum of money that was raised to build her an environmentally friendly house has been 'stolen' by the Council (same lot that invested their money in Icelandic Banks I assume?) Instead they have offered her an old toxic mouldy caravan - which she would be unable to tolerate.
The Council, who have no money to tarmac any other roads in Somerset, are now threatening to come and tarmac the small farm lane outside her shed, which is quite likely to kill her (she is particularly ill around petro chemicals - a fact of which they are fully aware). Just to put this in perpective, this lady had to be airlifted to her current location (at the expense of a UK celebrity), as she is unable to tolerate normal car fumes and has been hospitalised when coming into contact with these types of petrochemcal fumes before.
I am not sure how many severe ME and MCS patients like her are surviving in bleak conditions in the UK and around the world in this way.
ME/CFS Patients who have visited Dr Findlay's UK clinics are astonished to hear on the BBC of his 'success' rates with his CBT/GET approach, as very few who have been in patients there have experienced these improvements for themselves.
We have to hope that XMRV is the culprit, because the future can look very bleak sometimes.
Anyone know what type of treatments the Romford hospital would offer patients in such a condition ?
So let me get this straight NHS is responsible for providing access to health care but they can't help this woman? Why? Is it because they don't locally have the resources to treat her? If so then wouldn’t the proper procedure (In any moral health system) be too refer her to a location in the health system that does have the ability to treat her?
What would a local area in the NHS health system do if they didn’t have the means to address a person with sever MS, MD, etc? Wouldn’t they refer them to a location (hospital etc.) elsewhere within the system? (Note: Maybe I just don’t get it after all I’m not a citizen of the UK I’m sure their is plenty that I don’t know about the way things are. But it just doesn’t seem like this should be that complicated. Seems it should be common sense how to handle her situation.)
The only 'treatments' currently offered in the UK are Graded Exercise and CBT (plus anti depressants, sleeping tablets and antihistamines).
No antiviral treatments or investigations are permitted.
I think she may be better off at home personally with I/V fluids to hydrate and a nurse to help her with toileting etc.
Most ME patients who come to understand the reality of what UK NHS hospital treatment for ME actually means, wished they had stayed at home.
Sophia Mirza died after being admitted to a (psychiatric) hospital.
just ridiculous GET & CBT - she'd end up worse than she started
Why oh why is no-one asking what is physically wrong with her - testing her for pathogens, looking for inflammation of her central nervous system?????
The treatment of the severely affected in the UK is a national scandal
Why do they pay such high taxes and on top of that, need to pay more for Health Care?
Cos that's what happens to ME/CFS sufferers in the NHS.
It starts at 11 minutes 54 seconds
9 hours left to watch it.
If we have any property/capital it has to be used to fund nursing care - regardless of the diagnosis.
Our Evidence Based Treatments include:
Joint occupational therapy / medical follow-up clinics
Holistic team assessments
Individual lifestyle management
Return to Work Group
Lifestyle Management Group
Stress Management Group
Graded exercise therapy
Person centred counselling
Cognitive behavioural therapy
Dr Speedy says:
:Retro mad: For the love of God that's nothing but Emotional and Mental Support focused on lifestyle management. That might help their depression but not their ME/CFS.
The sadistic side of me sometimes wishes that all the universal blood donors with this disorder could give blood to all those who deny or cover up this disorder saying that it's psychiatric in nature. Force them to get at least three blood donations from three different people spread out over three years. Then give those folks about two years and see what develops.
Bet you that several of those disbelievers and deniers would be going crazy completely wiped out barely able to physically function and yet feeling like their brain and insides are crawling the walls. Does this make me a bad person that every once in a blue moon if think about this? Truthful I wouldn't wish this on anyone. But sometimes well...
Every patient is different as a reason for their poor excuse of "multi disciplinary" treatment - what a cop out! Why aren't they looking for how every patient is the same? Why haven't they been focussing how every patient is the same for the past 25 years?
How much would have the goverment gained in taxes, (and society from the continued contribution from active vibrant people) by supporting people to remain producive members of society?
The NHS, and the British Government, should be ashamed for being so short sighted...and so cruel.
Is this woman and her family just naive about the whole situation, do we know?
NHS Dorset may be doing many of us a big favour, ironically!
I think this is a terribly damaging report that has badly mislead the public into
Believing that there is effective treatment for ME, and that what we need is “the therapeutic environment” of Professor Findlay’s Hospital clinic in Essex for 6 months at the cost of 90,000!
This BBC report has shifted "the problem" from refusal to fund bioresearch and biomedical treatments, to "lack of funding" by the NHS.
We Know that Professor Findlay does not have a magic treatment, that what he does is CBT/Graded activity, that what he wants is money for his pet project.
It looks like Professor Findlay keeps muscling in on BBC interviews (has done for years). The BBC use him as an ‘ME Expert’ and in this television Report he has mislead the public to believe there is a “treatment” if only the NHS would give Professor Findlay’s clinic 90,000 per patient.
Findlay’s clinic has been going for many years; if he was so successful then we would all know about it.
A patients report of their stay at Prof Findlay’s Essex Clinic (2nd post down):
Professor Findlay AGAIN on BBC Radio 4 in 2007
You and Yours - BBC Radio 4
08.11.07 - Alternative Treatments for ME
PRESENTER: JOHN WAITE
Professor Findlay, the problem here is, isn't it, that whatever the last thing somebody had was and they suddenly feel better they're going to tie the two together aren't they?
“Well this is a condition which will naturally improve in many patients, so any treatment you introduce it's always a question of whether they're actually going into an improvement phase….”
Professor Findlay told the BBC that with "treatment" (CBT/GAT) at his centre two thirds of ME patients "have experienced significant functional benefits" ... AND "if they can't go to work, they're starting to go to work".
Professor Findlay is totally out of touch with reality to make such an unsubstantiated statements on BBC at a time like this because it gives the wrong and unsubstantiated message that he has treatment for us and with it we could "get back to work".
Professor Findlay appears to be totally oblivious to the fact that draconian measures are being taken to remove legitimate sickness and disability benefits from chronically sick people, and that patients with ME who are too sick to work are losing ESA and Disability Living Allowance in huge numbers, and that all of our cards are marked - its just a matter of time before they get round to all of us.
The DWP representative at the September AFME DWP conference said "We can't have people sitting around on benefits".
A friend who went to the conference told me they spoke with the representative from the Disability Alliance who was present, who said that they knew "three people with ME, and they all work!". Hard as nails to our plight.
Why do the BBC keep inviting Professor Findlay to speak on air?
He lives in an ivory tower.
The REAL story was XMRV and the blood ban. That story's been sidelined in favour of more misleading drivel.
Romford only does CBT & GET dressed up by the various euphemisms and "stakeholder" rehabilitation specalisms we see above. There used to be a web page with testimonials, not sure if it's still around, with the usual mix of people lionising GET and a few pointing out that the ward was "noisy and dirty" IIRC. Now we learn from the BBC's reporting that only 3% are severely affected!
The transcript of the Radio 4 programme Prof Findley was on a few years ago revealed that he is predictably obsessed with "fatigue" and that GET, or is it "pacing", could consist of housework; "sweeping and resting".
The NHS is 100% pro CBT/GET and doesn't convince when it occassionally tries to pretend it accepts M.E. As Romford demonstrates ME has been ousted from the nest by the enormous fat shapeless cuckoo of CFS, which is why we need our own political approach in the UK.
To top it all the biggest fake charity, AfME, probably thinks places like Romford are exemplary. And as Wildcat says this stuff is very publicly damaging for the ME cause and completes the black-is-white inversion that damages activism.
Someone should get in touch with the poor woman's family and disabuse them...
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