The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Anyone know a good doctor in the Greater Manchester area?

Discussion in 'ME/CFS Doctors' started by Jay Dezi, Aug 11, 2017.

  1. Jay Dezi

    Jay Dezi

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    I'm moving to the UK and I'm looking for a doctor that has some experience with CFS/ME.
    Technically, I'll be in Northwich, Chester, but it's just southwest of Manchester.

    Any suggestions on doctors, clinics or treatments in the UK?

    I've heard good things about Ampligen but it's not approved in Canada yet, do they have that in the UK?
    I've also heard about the Lighting Process, does anyone have any experience with that?
     
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  2. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Hello and welcome to the UK.

    Ampligen is not available in the UK, as far as I know.

    The Lightning Process is an unproven, unfounded psychological therapy which seems to involve brainwashing patients to pretend they are recovered. It makes a lot of money for its founder, and preys on vulnerable sick people. There are threads on it in here, if you want to know more. Don't waste your money.
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    If you're moving to the UK for better treatment and you think the lightning process might help you may want to wait and spend a little more time here and on bioscience research sites before deciding on moving ahead with treatment ideas. If you have ME you have a biological illness that is no more amenable to LP than would cancer, AIDS, ALS, Parkinson's , RA or any other biological illness whose eteology is based in physical pathology.

    ME is a complex neuro-immune disease that can affect multiple body systems and affects different systems in different people (thus the variation in symptoms).

    For some further thought see:

    http://forums.phoenixrising.me/inde...ng-process-does-it-work-if-so-then-how.28934/

    http://forums.phoenixrising.me/index.php?threads/phil-parker-ltd-on-pain.53098/

    http://forums.phoenixrising.me/inde...-confirmed-lightning-process-is-illegal.9906/

    Further there is a great deal of effort being made by Canadian sufferers of ME to get Ampligen approved for treatment here. It is not approved in the UK either where it is less likely to be accepted until the psychosocial adherents of CBT/GET are removed from their positions of power in UK medical politics.

    For understanding how ME is treated in the UK generally see the PACEtrial controversy here: http://www.virology.ws/mecfs/
     
  4. NelliePledge

    NelliePledge plodder

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    Phil Parker the inventor of the lightning process has had judgments against his company by the uk Advertising Standards Authority for unfounded claims on the website
    https://www.asa.org.uk/rulings/phil-parker-group-ltd-a12-210374.html
     
  5. Jay Dezi

    Jay Dezi

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    wow, thanks for all the replies! My brain has been mush since getting ME so i don't have the brainpower to be as informed on this stuff as I would like. I really appreciate your input.

    Sadly, I don't have the option of sticking around Canada, I'm marrying a Brit. :D I did sign the petition to have Ampligen fast-tracked in Canada though. @Snowdrop
    PS. Thanks for the Ampligen info @trishrhymes

    The thing that disturbs me is that I know 3 people who said the lightning process worked for them. They said it made the biggest difference in their recovery. It's hard to argue with that.

    I have a BSc in Biology so I did some digging.

    In theory, the LP could work. I don't really know what they do exactly but I bought the home study, which is supposed to prep you for the training course.

    They quote a lot of real scientific studies, I looked them up. The placebo effect is a real thing and something that we don't understand at all, but we see everywhere. Every scientific study has a control group to try to separate the people that get better because they think they're taking a drug vs. the people that actually get the drug. Generally speaking, about 20% of people in these studies fall victim to the placebo effect and often they recover just as much as the people who got the real drug. Go figure!

    There is a lot of evidence that real physiological changes happen in our body when our thinking shifts. That being said, whether or not the LP can harness this effect is something else entirely.

    It's helpful to know that they've been under investigation @NelliePledge

    After hearing your reactions, I'm a lot more skeptical about the LP. I'll probably grill the LP practitioner i've been in contact with before making my final decision. I know the whole thing smelly fishy, but if it's going to make me better, do I even care about anything else? I'd trade both my legs to be well again. :(
     
    Last edited: Aug 13, 2017
  6. Countrygirl

    Countrygirl I'm with Cheesus

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    A number of people have been made very ill by LP @Jay Dezi and deeply regret being taken in by this scam. Please be very careful if you have ME. I would say from what I have read that it is an abusive programme and is akin to pyramid selling. If, after researching all of the evidence, you still decide to go ahead with it, then I wish you the best............but most wouldn't touch it with a barge pole on account of the evidence.

    As for finding a doctor who is helpful .........they are as rare as hen's teeth. Such rare birds do exist though and I suggest you contact/join the MEA as they may be able to direct you to a recommended doctor from their list, especially if there is an ME group in the area.

    Welcome to the UK!!!
     
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  7. Jay Dezi

    Jay Dezi

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    Thanks @Countrygirl , I'll try to be smart. I really appreciate your concern. :) I didn't know about the MEA. That's great to know.

    Is there other resources I should know about? Like disability, or government tax breaks etc?
     
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  8. Countrygirl

    Countrygirl I'm with Cheesus

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    There is ESA for those too unwell to work, although it is means tested and PIP for those who are significantly disabled. However, it is very difficult to get now and I don't know if it is available for those who are coming from another country. It would be easy to get the information though from a government web site.

    You might be able to contact a ME support group in your area to ask about ME-friendly doctors.
     
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  9. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    I don't know whether you know about the PACE trial. It was a large study in the UK of exercise and psychological therapies for ME, though they actually widened the definition to include anyone with 6 months fatigue, which is not an internationally recognised definition of ME.

    To cut a long story short, despite this broad definition and lots of fiddling the figures, the treatments were no more effective in the long term than doing nothing.

    There was a short term placebo effect on questionnaires, but no measured objective evidence.

    As for the 3 people you know who say they got better with the Lightning Process, do you know them well personally and did they have properly diagnosed ME, including post exertional malaise, disabling long term fatigue, disordered sleep, and several other symptoms including widespread muscle pain, cognitive difficulties, headaches, sore throats, gut problems etc.

    And did these symptoms all disappear long term, ie for at least a couple of years so they were able to return to a full and active life.

    Part of the scam is to get people who have convinced themselves they have recovered to train at great expense as practitioners in a sort of pyramid selling scheme, so they have to go on pretending they are well and pushing the therapy on more people to recoup their money. It is therefore in their interests to recruit vulnerable people who are suffering from any other fatiguing condition including stress and depression and have been misdiagnosed as having CFS. They vet entrants, so are pretty likely to only choose those who don't really have ME and are the most suggestible.

    As for quoting scientific papers, there are multitudes of papers like the PACE trial that claim effects that when examined are illusory. And if all they are claiming is placebo effect, you can get that for free on the NHS with some CBT.

    You might like to watch the fascinating talks at a scientific symposium yesterday that are now on You Tube to learn more about the biological basis of ME. It is clear that psychological treatment is of no more relevance than it would be for cancer or MS.

    It's being discussed on this thread:
    http://forums.phoenixrising.me/inde...asis-of-mecfs-discussion-thread.53372/page-19

    The times of the talks are listed in post #376 on that thread.

     
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  10. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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  11. ukxmrv

    ukxmrv Senior Member

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    Try the Manchester ME society for a local doctor. I know that they have a name but it's slipped my mind right now

    Manchester ME Society

    Mrs Mary Ellis
    Tel: 07710 418 115

    Email: manchestermesociety@yahoo.com

    Facebook: https://m.facebook.com/groups/240909117256

    Manchester ME Society provides representation, campaigning, support and meetings. Membership is free.
     
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  12. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Sorry to go on about this. It is, of course, up to you to decide what you think. Just keep in mind the possibility that this person will tell you what you want to hear. It's a sales pitch. You could call it grooming.

    If you do decide to go ahead, can I suggest you keep a diary of your symptoms and how you are actually feeling to keep you grounded and help prevent you getting swept up in the process. Make it a private diary that you don't share with anyone and you don't tell them about - somewhere that you can be completely honest.

    Best wishes.
     
  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    I guess then this becomes an issue of how trustworthy you think they can be relied on to know and understand what ME is. In the UK the psych lobby have been very effective at muddying the waters by watering down the definition of cases of true ME to include other unexplained fatigue all under one big umbrella. If a person has mild ME they may be able to push themselves somewhat through their symptoms without such obvious payback as someone who's system has succumbed to the multi system complexity that produces more symptoms more severely. Or it's possible they have had Post Viral Fatigue Syndrome--pushed through and found their symptoms resolve naturally after a time.

    PVFS is real and I think might often account for some of the recovery from ME stories we hear.
     
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  14. charles shepherd

    charles shepherd Senior Member

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    If you go to the SUPPORT section on the home page on the MEA website:

    http://www.meassociation.org.uk

    you will find details of:

    1 Our ME Connect telephone information and support service

    2 A directory of local ME/CFS groups - who are a good source of local information re doctors etc

    3 A directory of all the NHS hospital based referral services in the UK

    Ampligen is NOT available in the UK

    The MEA does not recommend or endorse the Lightning Process, We have, in fact, made complaints to both the Advertising Standards Authority and to Trading Standards regarding promotional material for this expensive and unproven treatment

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  15. NelliePledge

    NelliePledge plodder

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    It is worth pointing out that the complaint to the Advertising Standards Authority that found the case proven that the material on the website was misleading was in fact taken by the Trading Standards which is a branch of the state.

    the practitioner is only going to give you the hard sell - personally I would not touch them with a bargepoll and hopefully the fact that the MEA have complained will be persuasive enough for you to step away from the practitioner
     
  16. PhoenixDown

    PhoenixDown Senior Member

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    Placebo effect? More like reporting bias.

    As for the Lightning ProcessĀ® it's a quack treatment.
     
    Last edited: Aug 14, 2017
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  17. Hilary

    Hilary Senior Member

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    Hi @Jay Dezi - I tried the LP quite a few years ago, basically because I also knew someone (with a clear diagnosis of ME apparently) who had done well with it, although NOT recovered - and she has suffered relapses since then. To cut a long story short, it was a total waste of Ā£600 :)bang-head:) and I got worse as a direct result. It does appear to be effective for some people (I believe especially younger ones) - but did they have ME in the first place? Diagnosis is so poor and certainly in the UK I have the impression it is be both over and under diagnosed. Essentially it's a case of you pays your money and you takes your choice but I would be very wary indeed....
     
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  18. Hilary

    Hilary Senior Member

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    Wasting lots of money doesn't bring on a smiley face for me.... why has that happened?? It should have been :bang-head::bang-head: lol
     
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  19. keenly

    keenly

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    I would not move anywhere near Manchester. I want to get out of the place!

    Manchester is highly polluted, over populated, chemtrails above every day, and new major used to be VP of British water fluoridation foundation.

    Out mitochondria can not function properly in a terrible environment.

    Go to the sun. Close to the equator away from nnEMF if you can.
     
  20. wiltedflower77

    wiltedflower77

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    Hi Jay just to add my opinion into the mix. I tried the LP in 2010 at the start of getting CFS/m.e mine is mild moderate in severity. The LP didnte help me personally at all. It is basically a mixture of NLP and positive self talk. If you have tried NLP before then you will know if it is something you resonate with. That's really all it is but because of the mystery around it it is almost made out to be something much more. I can see how it may help people who are low or a bit depressed or anxious but I don't see how it can resolve people's CFS unless they have fatigue symptoms which are caused by some underlying emotional problem which CFS is not. It's much more complex than that. I regret spending so much money on doing the LP. It's very over priced. Anyway have you been on Dr Myhills website. There is a Dr Jens Rohrbeck who specialises in CFS and treats in a similar way to Myhill ( she's not been seeing any new patients for years now). I have no personal experience of Dr Rohrbeck though. There aren't many Drs at all in the UK who specialise in CFS. Good luck with finding help. Let us know what you decide.
     
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