Wales (UK) - Govt petition P-05-926 To Provide a Chronic Fatigue Department in Wales

Sly Saint

Sly Saint

Senior Member (Voting Rights)
07/01/2020 - Agenda item, Petitions Committee P-05-926 To Provide a Chronic Fatigue Department in Wales
P-05-926 To Provide a Chronic Fatigue Department in Wales

This petition was submitted by Marjorie Ann Lasebikan having collected a total of 155 signatures on paper.


Text of Petition

There is no Chronic Fatigue Department in the whole of Wales! Chronic Fatigue is being overlooked or thought of as depression. I would like to see a Department set up with a view to individuals being assessed properly. General Practitioners say 'there is no cure' or 'you haven't been assessed'. Without a Chronic Fatigue department there can be no research into finding a cure or no means of being assessed.


I have suffered with this for 23years. The onset was after a week of high fever which showed as 104 on the 5th day. Little is known about Chronic Fatigue. I wrote up a Petition recently and collected 65 signatures with a view to setting up a department in Wales; it showed 20 had family members or friends suffering with it. It is so debilitating and such a waste of life. With an inability to think, concentrate or do anything physical without the need to go to bed afterwards. It can take days to overcome any effort however small.


I saw a woman being interviewed on television. She was at a Chronic Fatigue Clinic saying she had received a Myer's Infusion, which consists of Vitamins and Minerals, and felt so well she felt like her old self. It is not available on the NHS. I want to give it a try to see if this is the answer but need to find a private clinic to administer the Myer's Infusion. Last year I had a '5 day window' when I had clarity of thinking and energy. I do not know if this was because of taking a Vitamin B Complex capsule daily for a while. I saw a General Medicine doctor at Llandough Hospital recently [he sees many individuals with Chronic Fatigue] I told him of this infusion and he is interested in hearing the outcome of the procedure. I will report back to him. In the meantime, will you give your support to this Petition? It is essential to have some hope and the only way to achieve this is to have the right help in the first place. Not live a life unfulfilled. Thank you.
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http://www.senedd.assembly.wales/mgIssueHistoryHome.aspx?IId=26835&Opt=0

Research brief
http://www.senedd.assembly.wales/documents/s96850/Research Brief.pdf

My comments on the above:
Don't know anything about who proposed this but imo it's a pretty poor representation of the problem and the illness. 'Chronic fatigue'(?)
Most people with CFS get better over time, although some people do
not make a full recovery. It's also likely there will be periods when a person’s
symptoms get better or worse. Children and young people with CFS/ME are more likely to recover fully.
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sigh, was hoping for something more positive.
 
It seems hard to persuade people not to lobby for services: many don’t seem to have realistic expectations of what they’re likely to get. In my country, people have been lobbying as they want Ampligen and some other expensive drugs available in a few expensive US private clinics to be offered, where the chances of getting that are very low but a CBT and/or rehab service could easily result. Similarly, little chance Myers Cocktails are going to be offered on NHS for ME/CFS.
 
Ignoring the problems with the case linked to this petition, it is an interesting dilemma as to whether we should be seeking more or fewer specialist ME services before the NICE review is complete.

In principle everyone should have access to appropriate specialist provision, but it is arguable that the current specialist services in the UK do more harm than good. It is arguable that overnight the closure of the current specialist services would result in a net benefit for people with ME.

We desperately need clear indications of what a beneficial ME service, on the basis of our current knowledge, should involve and to get rid of the harmful GET and inappropriate psychological interventions most of the current specialist provision focuses on.
 
I wish the people here in the Isle of Man had asked for help from somewhere like the MEA before bulldozing ahead. Their wish has been answered and now we have a neorophyscologist due to start in April. After a Google search neurophyscologists work with occupational therapists etc so in a round about way we are getting GET and CBT
 
The ME community in the UK should be campaigning for 'services' to be abolished, not new ones added. Given that there are zero evidence-based treatments for ME/CFS, the only 'treatment' you're going to get is CBT/GET and you expose yourself to the risk of coming on the radar of psych services, and in cases of children, social workers and other arms of the state that could get you removed from your home and placed into some BPS gulag.
 
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