A petition you might want to consider signing
FYI As I recall, Denise Robertson, who made the erroneous statement about ME to a sufferer on live phone in, is a psychologist.
Signed so hurtful a public apology must happen.
Just saw ME Association letter to the channel about the incident. Excellent letter
Very good response by Dr Charles Shepherd with a think positive be cured response amongst the comments that shows the psychologists are concerned about future employment, when the psychiatrists are losing there political grip on a neurological condition.
I know some think that anytime such a comment is posted, and particularly if it is someone who continues to assert a similar position, that it could be some kind of psychiatric lobbyist posing as a sufferer.
I am not so quick to think that, although I don't doubt that they would use these tactics. I have encountered a couple of people who I know have ME and are desperate to believe that it is not incurable and that those of us who believe it is don't want to get well.
I know it was hard enough for me to accept, and I still have brief periods (not longer than half an hour) when I tell myself I will get well, but at age 62 and having had it for 13 years, I think it would take a miracle drug to make that happen. Even if such a thing were discovered tomorrow, I think those of us who rely on the NHS for treatment are unlikely to get it in the next 15 years afterward. Sad to say.
The evangelical fervour of the poster marks them as more than tattered hope of a patient, I was waiting for a web link that was dispensing something akin with "the lightning process" a modern spin on faith healing.
I retain some hope that is fragile, I try protecting this hope keeping a balance between the euphoria of cure discovery with the despair of another false dawn. Positive keeps people alive keeping down the suicide rate amongst those that have fought the disease and neglect as long as they were able.
Loneliness along with isolation is one of our greatest enemies as we try staying positive with support such as we find here.
Yes, Ian, You definitely have a point that they were too persistent to merely be a patient who can't accept being without hope.
There is one organisation I won't name, which is founded by a guy who says he has been able to recover from ME through various means. They really push their programme.
They employ a mix of 'therapies' and tests which include The Lightning Process, EFT, and NLP.
Those inclusions, regardless of the inclusion of some medical testing and supplements which may have overlap with ME specialist treatments who are more credible, would make me very wary of them. I enquired at one point and they sent me a video. I don't even remember if I watched.
The guy has a lot of youtube videos about how he recovered by using various methods. They are here in the UK, and say they believe that the NHS will fund their treatment centre, but it has not done so even after several years they have been trying. There is some evidence that they have links to the psychiatric groups, previous involvement in the psychiatric research by one of their board members, etc.
To even have a brief telephone or skype consultation with them is very expensive. They phoned me before I had even received their materials. As soon as they found out I have no money, they were rather disinterested in talking to me, but said that if my financial situation should improve, they hoped I would contact them again.
It frustrates me to have both the deep conviction that the NHS MUST be saved as a not for profit service for all, with minimal involvement of money making private companies; and at the same time see that most of us who are severely affected cannot get medical care from the NHS and more often than not they have a negative impact on our health, at least on our morale.
With a credible cure why would we have 250,000 in the UK along with 20 million world wide still ill.
The medical profession not meeting a clear need has left a desperate vulnerable community open for exploitation by quacks, my hope is history will judge this record within the lifetime of some of those involved at the highest level of medical politics.
I have signed and shared the link so more people are made aware.
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a fellow ME sufferer on the fibromyalgia HU forum, but as an ME and fibromyalgia sufferer I am also requesting...
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